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AUA 2015 Recap

In between manning the ICA booth in the Urology Care Foundation’s (UCF) Patient Advocacy Hub, ICA staff attended the presentations. Here’s a recap of some of the most IC-relevant courses, presentations, lectures, and poster sessions.
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New IC Research Literature Reviews

Wonder what new developments are happening in the field of IC research? Read our newest plain language summaries about advances in IC treatment, research, and understanding. Reviews include articles from journals indexed in MEDLINE, PubMed, and from other published sources on interstitial cystitis, painful bladder syndrome, bladder pain syndrome, and chronic pelvic pain.

ICA Pilot Research Program Awardees Selected

ICA is pleased to announce that Dr. Kristina Allen-Brady of the University of Utah and Dr. Pradeep Tyagi of the University of Pittsburgh are the newest recipients of research funding through ICA’s Pilot Research Program. The one-year awards of up to $50,000 are intended to fund novel and useful basic, clinical, or translational research studies that attempt to solve the many questions of IC – a bladder condition consisting of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency and urgency.

With this funding, Dr. Allen-Brady’s research, A pilot study to identify predisposition genes for Interstitial cystitis/painful bladder syndrome, will investigate the possibility of using genetic testing to determine those at risk of developing IC. Though etiology of IC is unknown, family history is a leading known risk factor for future occurrence of IC. “I am very appreciative of pilot study funds from the ICA for my continued work on interstitial cystitis/painful bladder syndrome, “says Dr. Allen-Brady. “These funds allow us to identify existing pathology samples from high-risk pedigree members diagnosed with IC and study genetic risk factors for this debilitating disease.”

Dr. Tyagi and his research team, in his study entitled, Urinary proteases and exosomes as non-invasive biomarkers of interstitial cystitis, will investigate the potential of developing a diagnostic test for IC based on molecular signatures of urine. Ongoing research in the laboratory has indicated that expression of chemokines and proteases may be intertwined in IC. Therefore, it may be possible to discriminate between true IC patients and patients with other bladder or pelvic floor disorders. Asked about his research, Dr. Tyagi said, “ICA funding will help us carry out a pilot clinical study on IC patients for identifying a protease uniquely expressed by IC patients. Upon successful completion of this pilot study, we will partner with a biotech company to develop a urine-based non-invasive test for IC patients that can potentially assist in diagnosis and measuring patient response to therapeutic intervention.”

Both studies are important steps toward better treatment and finding a cure for IC. Their potential to advance the ability of healthcare providers to identify individuals at high-risk of developing IC, in conjunction with improvements in prevention, screening, and treatment, have the possibility of dramatically reducing the disease’s impact on the lives of those affected by IC.

“Some patients can go years suffering with IC before they are diagnosed and properly treated. The research of Drs. Allen-Brady and Tyagi and their teams could speed a patient’s time to diagnosis and to earlier, possibly more effective, treatment,” said Lee Claassen, executive director of the Interstitial Cystitis Association.

Funding research is vital for those who suffer from the disease. Donations to ICA have enabled the organization to support this and other promising research. Continued support of ICA is critical to furthering IC research. Because of the discoveries and work by so many diligent investigators, there is hope for development of better treatments and an eventual cure for IC.

NIH-Supported Researchers Map Epigenome of More than 100 Tissue and Cell Types

Chemical compounds that modify, or mark, the genome in a way that tells it what to do, where to do it and when to do it, is known as the epigenome. Not part of the DNA itself, these epigenomes can be passed on from cell to cell as they divide, and from one generation to the next. Mapping the human genome expanded our understanding of the genetic basis of health, and new maps of the human epigenome hold the promise of further discovery.

Currently, more than 100 types of cells and tissues have been epigenomically mapped by researchers supported by the National Institutes of Health Common Fund’s Roadmap Epigenomics Program. The data, available to the biomedical research community, can be found at the National Center for Biotechnology Information website.

Only TWO WEEKS REMAINING to Submit Your Application for the ICA Pilot Research Program

The Interstitial Cystitis Association (ICA) invites investigators from all disciplines interested in studying interstitial cystitis (IC), also known as painful bladder syndrome or bladder pain syndrome, to submit an application for the 2015 ICA Pilot Research Program. One-year awards of up to $50,000 will be granted to fund novel and useful basic, clinical, or translational research studies that attempt to solve the many questions of IC. Specific areas of interest are (but not limited to):

  • Etiology of IC
  • Serum or urine markers
  • Treatment modalities
  • Neurophysiology
  • Pain management
  • Pregnancy & IC
  • Diet & Nutrition

Past projects have done work on isolating biomarkers offering promising urine tests for diagnosing IC, research on IC urinary markers, the genetics of IC, using gene therapy for IC, and innovative delivery systems for pain medicines. Many of these funded pilot IC research projects went on to receive National Institutes of Health (NIH) research funding. Submit your application to the ICA Pilot Research Program today!

The deadline to apply for the 2015 ICA Pilot Research Program is February 27, 2015. The award period is June 1, 2015 through May 31, 2016. Go to to learn more about this funding opportunity and to download the application.

ICA Pilot Research Program is Now Accepting Applications

The Interstitial Cystitis Association (ICA) invites investigators from all disciplines interested in studying interstitial cystitis (IC), also known as painful bladder syndrome or bladder pain syndrome, to submit an application for the 2015 ICA Pilot Research Program. The Program grants one-year awards of up to $25,000 to fund novel and useful basic, clinical, or translational research studies that attempt to solve the many questions of IC. Areas include, but are not limited to:

  • Etiology of IC
  • Epidemiology/burden of disease (especially in children)
  • Serum or urine markers
  • Treatment modalities
  • Neurophysiology
  • Pain management
  • Pregnancy & IC
  • Diet & Nutrition

The deadline to apply for the 2015 ICA Pilot Research Program is February 27, 2015. The award period is June 1, 2015 through May 31, 2016. Go to to learn more about this funding opportunity and to download the application today.

Share this funding opportunity with your colleagues and fellows.

New Research Literature Reviews

Wonder what new developments are happening in the field of IC research? Read our newest plain language summaries about advances in IC treatment, research, and understanding. Reviews include articles from journals indexed in MEDLINE, PubMed, and from other published sources on interstitial cystitis, painful bladder syndrome, bladder pain syndrome, and chronic pelvic pain.

Allergan Buys IC Treatment Device

Pharmaceutical giant Allergan recently bought world-wide rights to a device that is implanted into the bladder to provide continuous slow-release lidocaine for the treatment of IC. Originally described in 2010 in the Journal of Controlled Release, LiRIS (for lidocaine-releasing intravesical system) is a pretzel-shaped silicone tube that delivers the drug over the course of two weeks; Taris Biomedical conducted the clinical trials for the device.
Source: R&D Magazine

Changes to AUA IC Guideline

The American Urological Association (AUA) clinical guideline for IC has been revised to be current with recent and newly published research. The official guideline remains very flexible and designed to be adaptable as more is learned about IC. It is a huge benefit to IC patients - helping to end the all-too-common misdiagnosis, underdiagnosis, mistreatment, and undertreatment, especially undertreatment of pain. To read a summary of the updated guideline, click here.

Research Study Now Enrolling

ICA is pleased to inform you that a research study is now enrolling women between the ages of 18 and 75 who have IC/BPS. This study will assess the effectiveness of an oral investigational study medicine (AQX-1125) to see if it will reduce the moderate to severe IC/BPS pain being experienced by study participants. To see if you pre-qualify and receive more information about this research study, please visit

ICA Attends the 15th Meeting of NIDDK's MAPP Network Steering Committee Meeting

ICA staff recently attended the 15th National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Network Steering Committee Meeting held on September 15-16 in Washington, DC. NIDDK launched MAPP to help better understand the underlying causes of the two most prominent chronic urological pain syndromes - interstitial cystitis (IC) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). ICA is one of only two patient advocacy organizations participating in the MAPP Steering Committee meetings. The researchers are planning Phase II of the study and are finalizing the Phase II protocols. Patient recruitment is expected to begin in early 2015. ICA thanks the patients and study participants of MAPP I for their dedication, commitment, and extremely high retention rate. Because of the discoveries made by so many diligent investigators both in MAPP and other research programs, there is hope for discovery of better treatments and an eventual cure for IC in the future.

Funding Opportunity

ICA is pleased to announce two new funding opportunities through The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK).

Primary care and specialty clinicians (inclusive of nursing and physical therapy), experts in prevention science, health behavior, epidemiology are required key investigators for the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium, and encouraged to apply.

Applications are due by November 20, 2014. NIDDK also advises that a letter of intent is strongly encouraged and must be submitted to the NIDDK by October 20, 2014.

To request additional information, please contact Dr. Tamara Bavendam at

ICA at AUGS/IUGA Scientific Meeting

On July 23-25, ICA staff members attended the annual American Urogynecologic Society/International Urogynecological Association (AUGS/IUGA) Scientific Meeting in Washington, DC, to meet with healthcare providers, advocate for IC patients and learn any new research developments. Here are some of the presented research results:

Triathlete Risk of Pelvic Floor Disorders, Pelvic Girdle Pain and the Female Athlete Triad

Triathlons, as well as many other high-impact sports, have undergone a surge in popularity. However, little research has been done into the prevalence of pelvic health and certain other issues associated with endurance training and events. In a presentation entitled, Triathlete Risk of Pelvic Floor Disorders, Pelvic Girdle Pain and the Female Athlete Triad, a research team from Loyola University Health System, led by Colleen Fitzgerald, MD, reported their findings that female triathletes are at risk for pelvic floor disorders, decreased energy, menstrual irregularities and abnormal bone density. Specifically, the study found that one-third of female triathletes report pelvic floor disorder symptoms, such as urinary incontinence, bowel incontinence and pelvic organ prolapse, and female triathletes who have had children have higher rates of stress urinary incontinence and pelvic organ prolapse than those that have not. In addition, eighteen percent of female triathletes have non-disabling pelvic girdle pain, and one in four female triathletes had at least one component of the female athlete triad - a condition characterized by decreased energy, menstrual irregularities and abnormal bone density from excessive exercise and inadequate nutrition. More results of this research can be found here:

Self-Reported Physical Activity in Patients with Painful Bladder Syndrome: Effect on Female Sexual Function

Results from research conducted at West Virginia University entitled, Self-Reported Physical Activity in Patients with Painful Bladder Syndrome: Effect on Female Sexual Function, reported that subjects who self-reported high levels of physical activity as measured by the Godin Leisure-Time Exercise Questionnaire exhibited significant improvement in the female sexual function index domains of desire, orgasms, and pain when compared to those with low activity levels. Additionally, Body Mass Index (BMI) between low and high activity levels was significant, specifically, a high BMI related to lower activity and vice versa.

Disparities in Areas of Knowledge of Pelvic Disorders in African-American and Other Women of Color Compared to Caucasian Women

A study overseen at Yale School of Medicine investigated the degree of disparity in areas of knowledge of pelvic disorders in other groups of women as compared to caucasian women. The researchers found that there are significant racial disparities in baseline knowledge among the different groups. They also recommended that targeted, culturally-sensitive education interventions are essential to reducing the personal and economic burdens created by pelvic disorders.

Does Pelvic Floor Muscle Training Enhance Pelvic Floor Muscle Recovery? An Assessor Blinded Randomized Controlled Trial

In this study, researchers in Norway found that the prevalence of pelvic floor muscle defects was reduced from six weeks to six months post-partum in women who did pelvic floor muscle training exercises as compared to those that did not.

Intra-Abdominal pressure changes during activities of daily living. How much is too much?

Researchers at the Auckland Bioengineering Institute in New Zealand found that, contrary to their initial assumptions, lifting does not create as much intra-abdominal pressure as originally thought. However, their data also established that coughing and constipation are the two worst intra-abdominal pressure creators.

The Interaction of Stress and Urgency Urinary Incontinence on Quality of Life

Investigators at Brigham and Women's Hospital in Massachusetts and Geisinger Center for Health Research in Pennsylvania reported their findings that urgency urinary incontinence and stress urinary incontinence have different effects on patient quality of life. In addition, and not surprisingly, they also found that the impact of urgency urinary incontinence on quality of life is greater for more severe symptoms.

Lidocaine Gel Improves Pain Perception in Women During Rigid Office Cystoscopy

Researchers at the Department of Urogynecology, MetroHealth System, in Cleveland, OH found that patients who received two percent Lidocaine gel pre-procedurally had significantly lower pain scores during rigid cystoscopy when compared to those who received plain gel. The results of this small study suggest that because two percent Lidocaine gel may decrease perceived discomfort during the procedure, women undergoing routine office-based rigid cystoscopy would benefit from receiving intra-urethral Lidocaine pre-procedurally.

The Impact of Pelvic Organ Prolapse Surgery on Interstitial Cystitis Symptoms

In this small sample size study, researchers at Drexel University College of Medicine, Albert Einstein Medical Center, in Philadelphia, PA, reported that it seems safe to perform pelvic surgery on IC/BPS patients because it does not appear to be associated with any worsening of IC/BPS symptoms. What’s more, pelvic surgery may actually help improve IC/BPS symptoms.

ICA Attends the 14th Meeting of NIDDK's MAPP Network Steering Committee Meeting

ICA staff recently attended the 14th National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Network Steering Committee Meeting held on June 16-17 in Baltimore, Maryland. MAPP was launched to help better understand the underlying causes of the two most prominent chronic urological pain syndromes - interstitial cystitis (IC) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). As one of only two patient advocacy organizations participating in the MAPP Steering Committee meetings, ICA encouraged the investigators to focus their continued research in areas that will translate into direct benefits for IC patients. During the meeting, the different working groups debated and established protocols and requirements for acquiring new study participants for the next five years of phase two of MAPP (MAPP II). They also thanked the patients and study participants of MAPP I for their dedication and extremely high retention rate of over 80% - almost unheard of among scientific studies. In addition, ICA is excited by the announcement of the expansion of MAPP to three new discovery sites - Cedars-Sinai Medical Center, Los Angeles, Boston Children's Hospital, and Queens University, Canada. Because of the discoveries made by so many diligent investigators both in MAPP and other research programs, there is hope for discovery of better treatments and an eventual cure for IC in the future.


ICA and the American Urogynecologic Society (AUGS) have created a joint research grant up to $10,000 funded equally by ICA and AUGS. ICA wishes to congratulate this year’s grant recipient, Judy M. Choi, MD of the University of California, Los Angeles. Her study, Chronic Stress Affects the Micturition Pathway via the Peripheral Corticotropin-Releasing Factor (CRF) Pathway, proposes to identify the connection between chronic stress and the development of IC/PBS. The study will provide a model of peripheral stress-modulated mechanisms that lead to bladder hypersensitivity and urinary frequency, which could improve the diagnosis and treatment of IC/PBS by better characterizing IC/PBS, thereby improving therapies for patients.

ICA Pilot Research Program Awards

ICA congratulates the three researchers who have been awarded a grant through the ICA Pilot Research Program, funded by the Imagine No IC research fund. These talented investigators seek to improve our understanding of interstitial cystitis with the greater hope of creating a world where IC is a thing of that past.


Larissa Bresler, MD, and her team at Loyola University, Chicago, in her study, entitled, Acupuncture for Female Interstitial Cystitis/Painful Bladder Syndrome, will attempt to determine the safety and tolerability of acupuncture in women with IC/PBS, as well as determine if acupuncture is effective in reducing pain in women with IC/PBS as compared to sham treatment. The impact and potential benefits of identifying new nonpharmacologic treatment in women with IC/PBS will be critical to reduce disease severity and improve quality of life across female IC/PBS and all Chronic Pelvic Pain subtypes.


Jayoung Kim, PhD, and her team at Cedars-Sinai Medical Center, Los Angeles, in her study, entitled, Interstitial Cystitis-Associated Microbiome and Proteome As Diagnostic Markers, will be trying to identify and validate IC-associated urinary diagnostic biomarkers. This project has the potential for significant clinical impact because results may lead to clinical methods to increase diagnostic accuracy and an improved understanding of the molecular basis of IC and its relationship to urologic conditions with overlapping symptoms.


Stephen Walker, PhD, and his team of investigators at Wake Forest University Health Sciences, Winston Salem, NC, in his study, entitled, Correlation of Gene Expression with Bladder Capacity in Interstitial Cystitis, will be determining whether bladder capacity is a key delineating factor that differentiates IC subtypes.

Leaders in IC Educate Clinicians at AUA

In his course presented at AUA2014, Urological Pelvic Pain: The “Nuts and Bolts” of Therapy, ICA Medical Advisory Board and ICA Board member, Dr. Robert Moldwin, with help from fellow ICA Medical Advisory Board member and former ICA Board member, Dr. Robert J. Evans, dispensed important information for clinicians already comfortable diagnosing various pelvic pain illnesses but who desired to enhance their knowledge base and skill set regarding treatment. Pain management strategies, conservative and “aggressive” approaches to urological care were also discussed in detail.

Federal Pain Research Database Launched

The Interagency Pain Research Portfolio (IPRP), a database that provides information about pain research and training activities supported by the federal government, has been launched by six federal agencies. This multi-agency effort combines pain research information in a single user-friendly database.

9th Annual NIH Pain Consortium Symposium on Advances in Pain Research

ICA recently attended the 9th Annual NIH Pain Consortium Symposium on Advances in Pain Research. The emphasis this year was on biological and psychological factors that contribute to chronic pain. This annual symposium helps the Pain Consortium develop a comprehensive and forward-thinking pain research agenda for the NIH, identify key opportunities in pain research, and foster multi-disciplinary and trans-NIH initiatives. There were some exciting findings presented by the researchers at the symposium. Among them were the results of Dr. Lisa Kilpatrick’s study, Resting State Alterations in Women with Interstitial Cystitis/Painful Bladder Syndrome, who found that women with IC may have both a sensory and motor pathology which alters the connectivity within their brain network previously associated with urinary bladder function. ICA is very excited by the findings of Dr. Linda Watkins. In her study, Targeting Glial Activation for Treating Chronic Pain and Improving the Clinical Efficacy of Opioids, it was found that glial cells, part of the nervous system, can create and maintain enhanced pain, and that glial cell activation is linked to opioid tolerance, dependence/withdrawl, and opioid reward. Therefore, targeting glial cells may suppress opioid-induced respiratory depression and constipation as well as provide a novel approach to pain control and increase the effectiveness of opioid analgesics. What’s more, these findings could apply to more than just opioids as the effects of alcohol, cocaine, and methamphetamine are all also amplified by glial cells. If you’d like to see the application of this research in action, watch the news report about Dr. Watkins’s study.

Recent Results from ICA Pilot Research Projects

Often investigators with novel interstitial cystitis (IC) research ideas cannot get funding from the National Institutes of Health (NIH) because they lack preliminary data. To help them overcome that obstacle, the ICA Pilot Research Program was begun in 1985 and remains the first and only IC-dedicated research program funded by a non-profit, patient association. To date, the ICA Pilot Research Program has funded over 70 IC research projects, totaling more than $1 million. We are pleased to share the results of three recently completed ICA pilot research projects that were funded by the generous donations of supporters like you.
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PCORnet BIO Briefing

Last week, ICA staff also attended the Biotechnology Industry Organization (BIO) briefing on the National Patient-Centered Clinical Research Network (PCORnet). PCORnet aims to create a national infrastructure for patient-centered clinical research, which would increase the quantity, quality, and timeliness of research information, speed the implementation of and use of evidence, and influence research funded by others. It is hoped that this network will transform clinical research by engaging patients, providers and health systems to improve care and advance medical knowledge.

Path to Prevention of LUTS Workshop

Last weekend, ICA staff attended the Path to Prevention of Lower Urinary Tract Symptoms (LUTS) in Women: Bladder Health workshop, in Washington, DC. The NIDDK-sponsored workshop brought together medical, nursing, physical therapy, patient education, behavior change, epidemiology, public health, and prevention experts in a scientific setting structured around defining bladder health as a first step toward prevention. To date, the majority of public and private research efforts have focused on management and treatment of severe symptoms. Investigating the potential role of prevention efforts to lessen the impact of LUTS on women represents a new direction in women’s urologic health research, one with the potential to benefit many women.

Department of Defense Peer Reviewed Medical Research Program Now Accepting Applications

The Department of Defense (DoD) Peer Reviewed Medical Research Program (PRMRP) has been allocated $200 million for fiscal year 2014 and is now accepting applications.And thanks to ICA’s education efforts on Capitol Hill, interstitial cystitis remains one of the 25 congressionally directed topic areas. Since 1999, the PRMRP has supported research across the full range of science and medicine, with an underlying goal of enhancing the health and well-being of military service members, veterans, and beneficiaries. The PRMRP challenges the scientific and clinical communities to address the congressionally directed topic areas with original ideas that foster new directions in basic science and translational research; novel product development leading to improved therapeutic or diagnostic tools; or clinical trials that address an immediate clinical need.
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ICA Attends NIDDK's MAPP Network Steering Committee Meeting

ICA staff recently attended NIDDK's Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Network Steering Committee Meeting held on March 13-14 in Bethesda, Maryland. MAPP was launched to help better understand the underlying causes of the two most prominent chronic urological pain syndromes - interstitial cystitis (IC) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). As one of only two patient advocacy organizations participating in the MAPP Steering Committee meetings, ICA encouraged the investigators to focus their continued research in areas that will translate into direct benefits for IC patients. At the midpoint of the meeting, results of MAPP I (the first phase) were discussed as well as plans for the second phase, or MAPP II. Some specific topics were: biomarkers for IC, the possible infectious etiology of IC, urological issues, genetics, and analysis of phase I data to support phase II research. Among the data evaluated were the trends pertaining to symptom changes and variability, as well as assessment of flares. In addition, the steering committee also discussed many of the potential protocols for the second phase of MAPP. Because of the discoveries made by so many diligent investigators both in MAPP and other programs, there is hope for discovery of better treatments and an eventual cure for IC in the future.

DoD Peer Reviewed Medical Research Program Fiscal Year 2014 Appropriation Announcement

Defense Health Program
Department of Defense Peer Reviewed Medical Research Program
Fiscal Year 2014 Appropriation Announcement

The Fiscal Year 2014 (FY14) Defense Appropriations Act provides $200 million to the Department of Defense Peer Reviewed Medical Research Program (PRMRP). The funding is provided to support select medical research projects of clear scientific merit and direct relevance to military health.

Research support is restricted to the following congressionally directed topic areas:

  • Acupuncture
  • Arthritis
  • Chronic Migraine and Posttraumatic Headache
  • Congenital Heart Disease
  • DNA Vaccine Technology for Postexposure Prophylaxis
  • Dystonia
  • Epilepsy
  • Food Allergies
  • Fragile X Syndrome
  • Hereditary Angioedema
  • Illnesses Related to Radiation Exposure
  • Inflammatory Bowel Disease
  • Interstitial Cystitis
  • Lupus
  • Malaria
  • Metabolic Disease
  • Neuroprosthetics
  • Pancreatitis
  • Polycystic Kidney Disease
  • Post-Traumatic Osteoarthritis
  • Psychotropic Medications
  • Respiratory Health
  • Rheumatoid Arthritis
  • Segmental Bone Defects
  • Tinnitus

The vision of the PRMRP is to improve the health and well-being of all military service members, veterans, and beneficiaries. This program is administered by the U.S. Army Medical Research and Materiel Command (USAMRMC) through the Office of the Congressionally Directed Medical Research Programs (CDMRP).

FY14 PRMRP program announcements and general application instructions are anticipated to be posted on in Spring 2014. Application deadlines will be available when the Program Announcements are released. This press release should not be construed as an obligation by the government.

All applications must conform to the final program announcements and application instructions that will be available for electronic downloading from the website. The application package containing the required forms for each award mechanism will also be found on A listing of all USAMRMC funding opportunities can be obtained on the website by performing a basic search using CFDA Number 12.420.

Point of Contact:
CDMRP Public Affairs

Book mark the Congressionally Directed Medical Research Program (CDMRP) website:

Follow CDMRP on Twitter at:

View CDMRP research results on YouTube:

ICA Pilot Research Program is Now Accepting Applications

What causes interstitial cystitis (IC)?
When will IC be easier to diagnose?
When will there be more effective treatments for IC?
Will there ever be a cure for IC?

We’ve got questions, and research has the answers.

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Effects of Chronic Stress Can be Traced to Your Genes

Researchers find similar stress response characteristics in mice and humans.

New research shows that chronic stress changes gene activity in immune cells before they reach the bloodstream. With these changes, the cells are primed to fight an infection or trauma that doesn’t actually exist, leading to an overabundance of the inflammation that is linked to many health problems.

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Four New Clinical Trials in the US, Canada Recruiting IC Patients

Did you know that by participating in an IC clinical trial, you can play a more active role in your healthcare, gain access to new IC research treatments before they are widely available, and help others by contributing to medical research? Four new IC clinical trials that have began recruiting participants.

  • Cyclosporine in Interstitial Cystitis: Efficacy, Safety and Mechanism of Action (CIC): The purpose of this clinical trial is to study a drug that suppresses the body’s immune response, Cyclosporine. Although Cyclosporine is currently not approved by the Food and Drug Administration (FDA) to treat IC, it is considered to be a fifth-line treatment for IC according to the American Urological Association’s Clinical Guideline for IC. The researchers in this clinical trial will assess how well Cyclosporine works for IC, what its side effects are, and what its mechanism of action on the body is. The study is located at The Cleveland Clinic in Cleveland, Ohio.
  • Efficacy and Safety of AQX-1125 in IC/BPS (LEADERSHIP): The primary purpose of this clinical trial is to evaluate the effect of 6 weeks of treatment with once daily administration of AQX-1125—an experimental anti-inflammatory compound—has on IC pain. The clinical trial has several locations in Canada, including study centers in British Columbia, Ontario, and Quebec.
  • Safety and Clinical Outcomes Study: SVF Deployment for Orthopedic, Neurologic, Urologic, and Cardio-pulmonary Conditions: The purpose of this clinical trial is to study the safety and clinical outcomes of the use of fat derived adult (non-embryonic) stem cells for the treatment of inflammatory and/or degenerative conditions that result in damage to various organs and body systems. Conditions being investigated in this stem cell study include IC. These stem cells are believed to have the ability to seek out areas of injury and regeneration and assist in the repair of nerves, blood vessels, muscle, fat, cartilage, bone, and many other structures. The study is located at the California Stem Cell Treatment Center in Rancho Mirage, California.
  • Sensory Sensitivity and Urinary Symptoms in the Female Population: The purpose of this clinical trial is to assess whether IC symptoms (bladder pain and urinary urgency and frequency) are related to sensory sensitivity elsewhere in the body. Individuals in this study will undergo urodynamics to measure sensory sensitivity in the bladder, as well as pressure pain and auditory (hearing) loudness threshold tests to measure sensitivity touch and sound. The study is located at the University of Michigan in Ann Arbor, Michigan.

To learn about other IC clinical trials that are recruiting, go to

What Your Urine Can Reveal About You

A team of researchers at the University of Alberta announced last week that they have determined the chemical composition of human urine. The seven year study revealed the more than 3,000 chemicals or "metabolites" that can be detected in human urine.

Understanding the chemical composition of urine is of particular interest to physicians, nutritionists, and environmental scientists because urine can reveal a lot about a person's health, diet, drug intake, and exposure to environmental pollutants. The results of this new discovery are expected to have significant clinical implications. In fact, new urine-based diagnostic tests for certain cancers, celiac disease, ulcerative colitis, pneumonia, and organ transplant rejection are already being developed or are on the market, thanks in part to this work.

The study may have implications for IC, too. Using the data from the study, researchers will have the ability to compare the 3,000 or so chemicals in the urine of IC patients to urine from healthy individuals. This could potentially help with the identification of a definitive biomarker for IC and, eventually, the development of a non-invasive IC diagnostic test.

To learn more about potential biomarkers and diagnostic tests for IC, read the ICA Literature Review section.

ANPF/ICA Joint Grant Applications Due September 26

This year, ICA is pleased to announce another joint research grant, this time with the American Nurse Practitioner Foundation (ANPF). One (1) $10,000 grant will be awarded to a nurse practitioner interested in the following research topics:

  • Advancing the understanding about the underlying mechanisms, optimal treatments and clinical practice models, and epidemiology of IC.
  • Research involving treatment clinical practice models across the multidisciplinary IC treatment team is encouraged.

The application submission deadline is September 26, 2013. For more information on eligibility and how to apply, visit the ANPF’s website.

Not a nurse practitioner? Please share this information with the nurse practitioners in your IC healthcare team.

LiRIS® Study Opens Across the US and Canada

TARIS Biomedical® has initiated a second Phase 2a study investigating LiRIS in women with Interstitial Cystitis (IC). LiRIS is designed to continuously provide lidocaine over an extended period in the bladder. You may be able to participate! The study is currently active at 11 study centers across the United States, and will ultimately include up to 20 study centers in the US and Canada.

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Phase II of MAPP Research Network Coming Soon

ICA Executive Director Lee Claassen and Program Manager Anita Roach recently attended the 11th Steering Committee Meeting of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, serving as the voice for the more than 12 million Americans with IC. MAPP is a multi-year, multi-center project sponsored by the National Institutes of Health (NIH).

The deeply committed MAPP group is wrapping up data analysis on the over 1,000 people who participated in MAPP biomarker, neurological, infectious etiology, epidemiology, and phenotyping studies, as well as animal studies performed by the researchers in Phase I. The researchers are currently in the planning stages of the second phase of MAPP, which is set to begin next year.

We are happy to report that there are exciting findings from Phase I. To find out what MAPP researchers have discovered thus far and exactly what it means to IC patients, register for the 2013 ICA Patient Forum: Empowering IC Patients with Knowledge and Hope. New MAPP Chair and ICA Medical Advisory Board member Quentin Clemens, MD, and National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Program Scientist Christopher Mullins, PhD, will discuss the findings at the Forum.

NIH Pain Consortium Focused on Self-Management

The National Institutes of Health (NIH) Pain Consortium recently held their 8th annual symposium which highlighted advances in NIH-funded pain research. This year’s theme was "Integrated Self-Management Strategies for Chronic Pain”, based on the recent Institute of Medicine (IOM) Report, which recommends using self-management techniques for chronic pain—a condition that is estimated to cost the nation about $600 billion per year.

The research presented at the meeting demonstrated the importance of self-management in successfully living with chronic pain conditions like IC. Because self-management is so important in IC, ICA is in the process of developing the program, ICHope Self Management Module – A Staged Approach to Managing IC Pain. This new, online stage-based program is set to launch in August of this year. To get a sneak preview of the program, register for the 2013 ICA Patient Forum: Empowering IC Patients with Knowledge and Hope. At the Forum, Deborah A. Levesque, PhD, of Pro-Change Behavior Systems, will discuss the details of this new program.

ICA at AUA 2013: The Latest in IC Research

Several new studies were presented at the American Urological Association (AUA) 2013 annual meeting that help provide new insights for interstitial cystitis (IC) cause, diagnosis, and treatment. More than 11,000 urologists attended this exciting meeting. Here are some of the highlights!

LiRIS Pretzel, Hyp-hOP Clinical Trials Now Recruiting

This month, we have added two new studies to the IC Clinical Trial list. The LiRIS—also known as the lidocaine pretzel—study led by J. Curtis Nickel, MD, is now recruiting for its second Phase II clinical trial. Recruiting locations are in California and North Carolina. Read more about this study in the winter 2012 issue of the ICA Update.

Have IC and overactive bladder (OAB)? Well, this second study might be of particular interest to you. The University of New Mexico, in collaboration with National Center for Complementary and Alternative Medicine (NCCAM), is studying whether hypnotherapy or pharmacotherapy (Hyp-hOP) is better for treating OAB. Go to the IC Clinical Trial page for more details.

Why participate in an IC clinical trial? By participating, you can play a more active role in your healthcare, gain access to new IC research treatments before they are widely available, and help others by contributing to medical research.

ICA Medical Advisory Board Physician Selected as NIH Pain Committee Member

Earlier this year, the Interstitial Cystitis Association (ICA) nominated ICA Medical Advisory Board member, Daniel B. Carr, MD, Tufts University School of Medicine, to become one of the newest members of the NIH Interagency Pain Research Coordinating Committee (IPRCC). Its members include biomedical researchers, representatives from nonprofit public advocacy organizations, and representatives of seven federal government organizations that deal with pain research and patient care. ICA is proud to announce that Dr. Carr has been selected as one of the newest members of the IPRCC!

Dr. Carr’s selection into the Committee means that interstitial cystitis (IC) will not be left out of the conversation as the Committee works to create a comprehensive population health level strategy for pain prevention, treatment, management, and research, as well as identify critical gaps in basic and clinical research on the symptoms, causes, and treatment of pain.

With Dr. Carr’s wealth of knowledge and experience in pain management and IC, we know that he will be a great addition to this Committee. As the Committee moves forward with this important work, we will keep you apprised of their progress. Until then, you can catch Dr. Carr at ICA’s 2013 Patient Forum:Empowering IC Patients with Knowledge and Hope, where he will be presenting alongside Barry Jarnagin, MD, on the Pros and Cons of Opioids.

Are you a healthcare professional interested in learning more about pain? Consider enrolling in Tufts University summer course, Interprofessional Team Management of Pain. Directed by Dr. Carr, the one-of-a-kind blended course provides healthcare professionals tools to analyze and, if needed, repair group dynamics within interprofessional teams. Attendees will acquire knowledge and skills for achieving real-world outcomes crucial to patient-centered care, with an emphasis upon painmanagement. The blended course involves 2 days of onsite learning and 4 online video conferences. Learn more the course on Tufts’ Pain Research, Education and Policy website.

Conquering Pain and Fighting Addiction

On Monday, April 8th, the ICA attended a meeting held by Research!America entitled, “Conquering Pain & Fighting Addiction: Policy Imperatives to Combat a Growing Health Crisis.” At the meeting, a distinguished group of experts served as panelists to discuss Research!America’s recent public poll findings and to highlight the growing challenges posed by pain and addiction in America. Panelists included:

  • The Honorable Asa Hutchinson, former DEA Administrator and Member of Congress
  • Douglas Throckmorton, MD, the current Deputy Director for Regulatory Programs, Center for Drug Evaluation & Research at the FDA
  • Story Landis, PhD, Director of National Institute of Neurological Disorders and Stroke (NINDS) at the NIH
  • Paul Gileno, the President & Founder of U.S. Pain Foundation
  • Carmen R. Green, MD, Associate Vice President and Associate Dean for Health Equity & Inclusion, Professor of Anesthesiology, Obstetrics and Gynecology, and Health Management and Policy at the University of Michigan
  • Rebecca Kirch, JD, Director of Quality of Life & Survivorship at the American Cancer Society

One of the most important findings of the public poll—only 18% of Americans see chronic pain as a major health problem. This is despite the fact that pain affects 100 million adults—more people than heart disease, cancer, and diabetes combined, according to an Institute of Medicine report. Not only does pain affect a large proportion of our society, the cost of pain is estimated to have been as much as $635 billion in 2010, according to the American Academy of Pain Medicine.

So, why might only 18% of Americans consider pain to be a major health problem? For one, pain is a silent epidemic, as panelist Dr. Green explained. People often do not talk about their pain. However, as panelist Paul Gileno explained, patients must begin to discuss their pain, starting with their inner circle. Also discussed was the need for healthcare providers of various specialties to have more pain education. The panelists agreed that because chronic pain is such a great burden on our society, there is a need for increased research in all aspects of pain management, including a need to find more effective, non-addictive pain medications.

Begin your own discussion on chronic pain—submit your story on the ICA’s Voices of Hope Blog, and then share your blog post on the IC Facebook community.

International Adhesions Society Survey Submitted to FDA

You may recall that the International Adhesions Society (IAS) recently conducted an online survey in hopes to obtain information, particularly scientific evidence, on issues pertaining to the use of opioid drugs in the treatment of chronic pain. 2840 patients consented to the survey, which is representative of 30 million Americans with chronic pain related IC, CAPPS, and other related conditions. Among the highlights of the study was the finding that a significant number of patients (92.4%) that currently take opioids would fall outside of the limits proposed to the FDA. Access to opioids for these patients would be compromised by the proposal. IAS has submitted the survey to the FDA for their review.

Click here to read the complete press release on the survey from IAS.

International Adhesions Society Survey on Opioids for Chronic Pain Patients

You may recall that the ICA recently testified at the FDA’s public hearing on the Impact of Approved Drug Labeling on Chronic Opioid Therapy. FDA held this meeting to obtain information, particularly scientific evidence, on issues pertaining to the use of opioid drugs in the treatment of chronic pain. The International Adhesions Society (IAS) hopes to complement our efforts by conducting an online survey, sponsored by KevMed, LLC, to provide FDA with actual data on opioid use in patients with chronic pain.

Who should participate: Anyone 18 years or older, living in the US and have chronic pain not related to cancer, including pelvic and abdominal pain due to adhesions, CAPPS, interstitial cystitis, IBS, pudendal neuralgia, endometriosis, and hysterectomy complications.

Length of time: 15 minutes

Link to survey:

FDA’s period for public comments ends April 8, so this survey will close in one week. Please take the time today to contribute to this critical issue!

Conducting IC Research? Check Out These Funding Opportunities

NVA Invites Medical Research Proposals

The NVA invites US and foreign basic science or clinical investigators to submit research applications to study the epidemiology, etiology, pathophysiology, diagnosis and/or treatment of Generalized Vulvodynia and/or Provoked Vestibulodynia (previously vulvar vestibulitis syndrome).
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NINDS Cooperative Program in Translational Research (U01) Grant

NINDS Exploratory/Developmental Projects in Translational Research (R21) Grant

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Interstitial Cystitis: Elucidation of Psychophysiologic and Autonomic Characteristics (ICEPAC)

Researchers at University Hospitals Case Medical Center in Cleveland, Ohio are currently seeking volunteers to participate in a research study to learn more about Interstitial Cystitis (IC) and Myofasicial Pelvic Pain (MPP). The goal is to better understand the potential causes of these disorders with the eventual goal of developing more effective treatment strategies.
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IC a Strong Focus in Latest NIDDK Report

Yet again, the National Institute of Diabetes and Digestive and Kidney (NIDDK) shows it is committed to interstitial cystitis (IC) research in its recently published annual report, Recent Advances & Emerging Opportunities 2013. In the Kidney, Urologic, and Hematologic Diseases (KUH) section of the report (page 105), IC is named as an important component of the NIDDK’s urology program, which houses the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. The report showcases some of the important findings in IC research from last year, as well as an intriguing patient profile on Veronica Garcia, a woman who is currently participating in research at the UCLA MAPP Research Network site.

Read the latest Recent Advances & Emerging Opportunities report. Also, be sure to check out the KUH section (page 105) which includes information about IC as well as Garcia’s story. On behalf of the millions of people who suffer with IC, the ICA would like to thank the director of NIDDK, Griffin Rodgers, MD, MACP, for the institute’s continued work in IC research.

Neural Basis of Mind-Body Pain Therapies

Anita Roach, MS, the Interstitial Cystitis Association's (ICA) Program Coordinator, recently attended the lecture Neural Basis of Mind-Body Pain Therapies by the National Center for Complementary and Alternative Medicine (NCCAM). Presented by Catherine Bushnell, PhD, this lecture addressed how mind-body therapies such as relaxation, meditation, yoga and cognitive-behavioral therapy can be used to help manage chronic pain. We already know that many interstitial cystitis (IC) patients receive symptom relief from CAM therapy. Dr. Bushnell’s lecture gave some of the science behind the therapeutic effects of CAM therapy in chronic pain.

Dr. Bushnell explained that psychological factors, including attention and emotion, can activate natural pathways in the brain that increase and decrease pain. Therefore, the amount of attention you have focused on pain can affect your pain intensity. For example, keeping a diary to assess pain may actually make pain worse because it requires patients to spend a lot of attention on their pain. On the other hand, CAM therapies that help you focus your attention in other places, such as mindfulness meditation, can be very helpful for managing chronic pain. They can also have a positive effect on emotion.

Also discussed was the effect of CAM therapy on brain anatomy. Research shows therapies like yoga can prevent thinning of brain gray matter. This thinning is often seen in chronic pain patients but is also a part of the natural aging process. Studies have shown that thicker gray matter (specifically an area in the brain called the insula) is associated with a higher tolerance for pain. Read more about The Brain on Pain in the fall 2012 issue of the ICA Update!

Lastly, Dr. Bushnell presented data on the placebo effect—often seen in acupuncture and other CAM therapy studies. Placebo analgesia (pain relief) involves natural pain pathways in the nervous system, including the same pathways that are affected by opioids and dopamine. When given medicine from their doctor, some patients may have an expectation that the drug will work. This effect can activate areas of the brain that decrease pain. Studies have shown that the placebo effect causes a release of the body’s natural opiate and dopamine brain chemicals. Conversely, pain relief from placebo is blocked when naloxone, a drug that blocks opioid receptors, is given along with a placebo to patients.

The ICA would like to thank Josephine Briggs, MD, Director of NCCAM, for adding the topic of chronic pain to their Integrative Medicine Research Lecture Series. We encourage NCCAM to continue to support studies in chronic pain conditions like IC.

New Clinical Trial on IC and Vulvodynia

This month, we have added a new study to the IC Clinical Trial list. Researchers out of the Scripps Clinic in San Diego, California are investigating whether chronic vulvar pain (also known as vulvodynia) in women may be present due to bladder pain. The researchers are performing a series of bladder instillations for IC and checking symptoms throughout the trial to see if significant relief of vulvar pain can be obtained through treating IC.

Why participate in an IC clinical trial? By participating, you can play a more active role in your healthcare, gain access to new IC research treatments before they are widely available, and help others by contributing to medical research.

Be sure to check out other IC clinical trials, including the ICEPAC Study led by Dr. Thomas Chelimsky of Case Western Reserve University!

New Review on Amitriptyline for Neuropathic Pain Generates Buzz

A new scientific review on the use of amitriptyline for neuropathic pain made a lot of buzz in the ICA Facebook community this week. Scientists at the University of Oxford reviewed the effectiveness of amitriptyline (brand name: Elavil)antidepressants in reducing chronic neuropathic pain (nerve pain) and fibromyalgia (FM) pain.

Amitriptyline is a tricyclic antidepressant (TCA) often used to treat FM and other chronic neuropathic pain conditions. In the American Urological Association Clinical Guideline for Interstitial Cystitis (IC), it is recommended as a second-line treatment. TCAs like amitriptyline help to treat IC by blocking pain and reducing urinary frequency. They also have sedative properties that may help decrease sleep problems. Although it has widespread use among patients with IC, FM, and other neuropathic pain conditions, the exact reason amitriptyline works is unknown.

The researchers of this review evaluated a total of 21 studies which included 1,437 participants. The studies were separated into two tiers. The top tier included studies that reported patients with at least 50% pain reduction from amitriptyline, lasted eight to 12 weeks or longer, had a treatment and non-treatment group, and had at least 200 patients enrolled in the study. The second tier included studies that did not meet these same standards and could be subject to potential bias.

Based on their review, the researchers found:

  • None of the top tier studies showed amitriptyline to be effective in treating neuropathic pain or fibromyalgia.
  • In the studies with potential bias, only 38% of patients benefited from amitriptyline.
  • Due to a lack of effectiveness, 5% of patients taking amitriptyline withdrew from the studies.
  • At least one adverse side-effect was experienced by 64% of patients taking amitriptyline.

The authors concluded, “Amitriptyline should continue to be used as part of the treatment of neuropathic pain or fibromyalgia, but only a minority of patients will achieve satisfactory pain relief.” However, “Limited information suggests that failure with one antidepressant does not mean failure with all.”

To learn more about the different classes of antidepressants used to treat IC, go to the ICA’s recently updated Antidepressants page.

IC May Be Underdiagnosed in Men

Using the RICE (RAND Interstitial Cystitis Epidemiology) study data, University of Michigan researchers looked for the prevalence of interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome in men, and found that symptoms of both are widespread among U.S. men.

As you may recall, the ICA's coverage at the 2012 AUA meeting discussed the pending publication of the following findings.

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Two New Clinical Trials Led by Experts in IC

By participating in an interstitial cystitis (IC) clinical trial, you can play a more active role in your healthcare, gain access to new IC research treatments before they are widely available, and help others by contributing to medical research. This month, we have added two new clinical trials from experts in IC:

Just Released from NIH

Just released from NIH—four new research grants in the IC and chronic pelvic pain field. We encourage you to consider submitting a grant application. ICA Executive Director Barbara Gordon spoke personally with one of the NIDDK directors who said that the Institute is excited about the opportunity to offer this unexpected grant funding. Get more information about these NIH grants in research funding opportunities.

November 2012 Research News

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Need for High Doses of Opioids Linked to Genetics

A new study presented at the 2012 American Academy of Pain Management (AAPM) Annual Clinical Meeting found chronic pain patients who need high doses of opioids for pain relief often have higher rates of genetic defects in the cytochrome P450 (CYP450) enzyme system compared with the general public. “It turns out that among high-dose patients, about 85 percent have these defects in 1 or more of their CYP450 enzymes,” says lead author Forest Tennant, MD. In the general public, only about 20 to 30 percent of people have one of these genetic defects.

The CYP450 enzyme system is involved in the process of drug metabolism. This process—occurring mostly in the liver—breaks down medicine into active substances. For example, codeine is converted to morphine in the liver by this system. In some people, this process occurs much faster and more completely than normal. “These people, known as ultra-rapid metabolizers, are likely to have higher-than-normal levels of morphine in their blood after taking codeine. These high levels can lead to overdose and death," says the Food and Drug Administration (FDA).

On the other hand, the process of drug metabolism can occur much slower and more incompletely for some people. "Such individuals are incapable of metabolizing codeine morphine, and thus incapable of deriving analgesia from administration of the medication,” says Gary M. Reisfield, MD, Chief of Pain Management Services in the University of Florida College of Medicine's Divisions of Addiction Medicine and Forensic Psychiatry and Department of Psychiatry. Both genetic defects can be detected through testing CYP2D6, a specific member of the CYP450 enzyme system.

There were several limitations to the study, and more research is necessary to fully understand the role genetics play in opioid metabolism. However, Dr. Tennant says these findings do suggest that genetic testing of the CYP450 may be an important starting point for evaluation when high doses of opioids are required for pain relief.

Check out the ICA’s Literature Review section to stay on top of the latest research advancements in interstitial cystitis and chronic pelvic pain.

MAPP Researchers Continue Their Efforts

The planning stages of the second phase of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research network are in full swing. The MAPP Research Network, a multi-year project sponsored by the National Institutes of Health (NIH), will continue to investigate interstitial cystitis (IC), chronic prostatitis, and associated conditions oftentimes found to co-exist. At the two-day September MAPP meeting, MAPP researchers (including representatives from six discovery sites across the country, a technology and tissue center, and a data coordinating center) discussed how to move forward with the data they collected in phase I. The researchers also discussed how they will build on collaborative efforts during phase II. It is exciting that the group is still deeply committed to finding new treatment approaches, identifying risk factors, and helping to predict which patients may respond to various interventions for IC and CP/CPPS.

An ICA representative attended the two-day meeting. Having a presence at this meeting allowed us the opportunity to serve as the voice for patients, offering suggestions from the viewpoint of the patient.

Expansion of the Symptoms of LURN Grant

Description: The present Funding Opportunity Announcement (FOA) is asking for added sites to join the current Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN) investigators to expand on validating symptom-based instruments to measure early, late, transient, and persistent symptoms both in males and females, and to better define the phenotypes of men and women with symptoms of lower urinary tract dysfunction (LUTD).
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3 New Research Studies

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A Breakthrough in Pain Medicine

A major breakthrough in opioid addiction and treatment has the pain world on the edge of their seats. A team of researchers from the University of Adelaide in Australia and the University of Colorado have discovered a drug that blocks the body’s mechanism of addiction to opioid drugs. It involves the immune system. Immune cell receptors attach to opioids similarly to how they attach to bacteria. These receptors then become amplifiers of opioid addiction.

This laboratory studied drug, called (+)-naloxone, is able to block the immune cell receptors’ interaction with the opioid, decreasing the immune-addiction response. The researchers state that blocking the immune response is enough to prevent addiction to opioid drugs. The opioid is then able to act on the central nervous system to create its analgesic (pain relieving) effect.

This study has been funded by the National Institute on Drug Abuse (NIDA) and the Australian Research Council (ARC). Clinical trials on (+)-naloxone may begin within the next 18 months.

AANP/Interstitial Cystitis Association IC/PBS Research Grant

The ICA Pilot Research Program funds studies that encourage research across the multidisciplinary IC treatment team. One goal is to fund research dedicated to advancing understanding about the underlying mechanisms, optimal treatments and clinical practice models, and epidemiology of IC.
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NIH Common Fund Expands Reach

The National Institutes of Health (NIH) Common Fund is pleased to announce two new programs:

Although the Interstitial Cystitis Association (ICA) has made tremendous strides in decreasing the length of time it takes to be diagnosed with interstitial cystitis (IC), there is still no definitive test to identify IC. The Undiagnosed Diseases Program (UDP) by the National Institutes of Health (NIH) Common Fund will work to further decrease the amount of IC patients who are undiagnosed. This program will provide a new network of medical research centers focused on the discovery, diagnosis and care of undiagnosed patients by capitalizing on recent advances in genomics and bringing together IC researchers and clinical scientists. More information about this program is available on the NIH Common Fund website at:

A second program by the NIH Common Fund, the Extracellular RNA Communication program, will explore new ways in which cells communicate with each other using extracellular ribonucleic acids (exRNAs) that are present in the space outside of and between cells. This will allow researchers to compare exRNAs found in normal human urine to exRNAs found in IC patients. Researchers will also be able to investigate the potential for using exRNAs in the clinic as therapeutic molecules or biomarkers of IC. More information about this program is available on the NIH Common Fund website at:

MAPP Researcher Speaks at Chicagoland Support Group

Attendees of the July 9th, Oak Park, IL, support group got a special treat this month—IC researcher, David Klumpp, PhD, shared insights about research investigating the roots of bladder pain and inflammation, including a potential probiotic for IC. For those of you who did not make it to the Chicago meeting, read about Dr. Klumpp’s research in the summer 2011 issue of the ICA Update.

Clinical Trial Updates

By participating in an IC clinical trial, you can play a more active role in your healthcare, gain access to new IC research treatments before they are widely available, and help others by contributing to medical research. Here’s the latest from

Assessment of Analgesic Treatment of Chronic Pain: A Scientific Workshop

The ICA attended the May 31st workshop reviewing the available research on the use of pain medicines (analgesics) in the treatment of chronic pain non-cancer pain (CNCP). Discussions were led by the scientific researchers, FDA officials, and other stakeholders:

  • Srinivasa Raja, MD, Professor, Director of Pain Research, Johns Hopkins School of Medicine discussed several randomized control studies on the efficacy of opioid analgesics for CNCP. Overall, these studies showed pain was decreased with the use of opioids compared to a placebo control. There was no clear difference in outcome among the different types of opioids used.
  • Dennis C. Turk, PhD, Professor of Anesthesiology and Pain Research, University of Washington, presented the limitations of pain medicine studies. For example, many patients with chronic pain do not want to take the chance of receiving a placebo drug. Also, studies tend to be short in length and the findings usually describe statistical improvements in outcome rather than clinical improvements of outcome.
  • Jane Ballantyne, MD, Professor of Education and Research, University of Washington, reviewed observational studies and concluded that higher doses of opioid drugs do not equal pain relief. Low to moderate dosages of opioid drugs over 1 to 2 years give the best pain relief in observational studies and more problems seem to occur with high dose users.
  • Michael C. Rowbotham, MD, Scientific Director, California Pacific Medical Center Research Institute, presented some alternatives to opioid analgesics. He discussed diet, cognitive behavioral therapy, exercise, and complementary and alternative medicines. Drug alternatives include antidepressants (TCAs, SSRIs, and SNRIs), anticonvulsants (gabapentin), and topical drugs (Lidocaine patch).
  • Pam Horn, MD, Lead Medical Officer, Division of Anesthesia, Analgesia and Addiction Products CDER/FDA, discussed a review of various treatment guidelines. She found a glaring conclusion: the definition of chronic pain differs among all of the guidelines.
  • Frank Porreca, PhD, Professor of Pharmacology, University of Arizona College of Medicine, presented basic research on opioid analgesics effect on the brain. A concern with the use of analgesics is the potential of addiction. Dr. Porreca found that mice in pain used opiates at a rate related to pain relief, and not substance abuse. He noted that pain relief and addiction seemed to be separable.

The overall message of this workshop was… we need more evidence, and soon! The risk vs. benefit ratio of opioid use is unclear. Also, research does not exist on long term use of the opioid drugs. The panelist agreed future studies need to find an algorithm (using genetics, phenotypes, or other biomarkers) to predict at risk groups.

NIH Centers for Pain Education

The National Institutes of Health Pain Consortium has selected 11 health professional schools as designated Centers of Excellence in Pain Education (CoEPEs). The CoEPEs will act as hubs for the development, evaluation, and distribution of pain management curriculum resources for medical, dental, nursing and pharmacy schools to enhance and improve how health care professionals are taught about pain and its treatment. Twenty institutes, centers and offices at NIH are involved in the consortium. "Virtually all health professionals are called upon to help patients suffering from pain," said NIH Director Francis S. Collins, M.D., Ph.D. "These new centers will translate current research findings about pain management to fill what have been recognized as gaps in curricula so clinicians in all fields can work with their patients to make better and safer choices about pain treatment."

NIH RFP for Translational Studies

The National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH) has recently posted several funding opportunities. As you may recall, NCATS was established to catalyze the generation of innovative methods and technologies that will enhance the development, testing and implementation of diagnostics and therapeutics across a wide range of human diseases and conditions. For IC researchers, these funding opportunities may be a vehicle for testing some of the medicines used off-label to treat IC symptoms—and hopefully begin to gather the scientific evidence required to gain FDA approval for an indication of IC.

Canadian Women with IC?

Name of Study: Safety Study of Single Intravesical Doses of TTI-1612 in Women with IC/BPS Sponsoring Organization: Trillium Therapeutics Inc.
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Celek Stopped IC Drug Development

Celek Pharmaceuticals has discontinued their development of a potential IC medication based on Dr. Susan Keay’s studies of antiproliferative factor (ATF). Celek shared with the ICA that they were unable to obtain funding to support additional studies to evaluate this potential new drug, and that the results obtained thus were not encouraging enough to continue to fund further research efforts. Celek does, however, continue to look for product opportunities that promise to help IC patients.

Imagine No IC Research Program Awards

Funding awarded through the ICA Pilot Research Program provides researchers with grant monies needed to get their projects literally “off the ground.” Last year, we awarded two biomarker grants and one epidemiology grant. This year, two awardees are researching what is happening on in the bladder wall on a cellular level, and the third is investigating the genetic links of IC.

Susan Keay, MD, PhD, Veterans Administration Medical Center, Baltimore, MD: Determining the Role of Abnormal Histone Deacetylase Levels in Aberrant BPS/IC Bladder Epithelial Cell Gene Expression. With this study, Dr. Keay, who has dedicated her research career to trying to figure out the mystery of IC, takes a different look at what is happening in the IC bladder. Starting with the published finding that changes in the cells lining the bladder cause IC, her team will look at the role of the “frizzled 8-related antiproliferative factor” made by these cells. The resulting abnormal bladder lining may be the reason for the thinning of the bladder wall and changes in permeability of the lining.

Alice Rickard, MS, Saint Louis University, St. Louis, MO: Estradiol on the Urothelial Barrier in IC/PBS Pregnancy. There are many unanswered questions about pregnancy and IC. For some, though not for all, IC symptoms subside during this special time. Like Dr. Keay, Rickard is also investigating the cell layers of the bladder lining. However, she’ll be investigating changes to the bladder wall that occur during pregnancy in response to fluctuations in hormones.

Kristina Allen-Brady, PhD, MSPH, MPT, University of Utah, Salt Lake City, UT: The Familiarity of Interstitial Cystitis. Dr. Allen-Brady and her team will analyze datasets from a computerized genealogy database for the state of Utah that is linked to medical diagnosis data from one of the state’s largest health care providers. Using this unique resource, this team will describe the familial clustering of individuals diagnosed with IC in both close and distant relatives, as well as identify overlapping conditions that are significantly associated with IC in both close and distant relatives.

The Interstitial Cystitis Association (ICA) Pilot Research Program began in 1985. ICA pilot research, funded through the IMAGINE NO IC campaign, has “opened the door” for many researchers and enabled them to obtain large government grants to further pursue their explorations into the causes and treatments of IC.

How Much of Your Tax Dollars Support Medical Research?

There’s an interesting feature on the White House website which lets you calculate how much of your tax dollars were spent on various federal programs and initiatives. Interested? Go to, enter the amount of your 2011 payment, expand the health care tab, and one check out the amount of your tax dollars spent on “health research and food safety.”

More IC Research Findings

Seven summaries from the latest research now available online. See the March 29, 2012 ICA eNews. Not receiving the ICA eNews...sign up for the mailing list.

A Letter from Laura

Dear Member of the ICA Community,

The purpose of this e-mail is to invite those who are living with interstitial cystitis (IC) to participate in the “Quality of Life & IC Study.” To be eligible to complete the survey, you must have been diagnosed with IC at some point in your life, and you must be 18 years of age or older.
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National Vulvodynia Asssociation—Call for Proposals

The Dr. Stanley C. Marinoff Vulvodynia Career Development Award was established to encourage medical professionals, especially those beginning a career in the field or achieving an advanced degree related to vulvodynia, to pursue a clinical and/or academic interest in the disorder. The award is $7500. For more Information contact Chris Veasley ( by Monday, March 26, 2012.

NIDDK Gives “IC” Shout Out

Open up the following report from the National Institutes of Health (NIH). You’ll discover that in his introductory remarks Griffin Rodgers, MD, MACP, mentions NIH’s commitment to funding interstitial cystitis (IC) research. We’ve got a dialogue going with the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) about IC research, a conversation which is essential to keeping the NIH and NIDDK focused on solving the puzzling mystery of IC.

Please take a few minutes to email Francis Collins, MD—he runs the NIH and is also Dr. Rodgers’ boss. On behalf of the millions of people who suffer with IC, thank him for the continued work of the NIH and NIDDK. Tell your story. Encourage Dr. Collins and his team to keep the momentum going, because dedicated IC research funding is crucial in order to find the answers that so many of us need. Send your note to

Here’s a link to the “Recent Advances & Emerging Opportunities” publication produced by NIDDK. The “Kidney, Urologic, and Hematologic Diseases” section (page 98) includes information about the recent study which found a staggering increase in the prevalence of IC in women.

New Website: NIH Clinical Research Trials and You

The National Institutes of Health has created a new website, NIH Clinical Research Trials and You to help people learn more about clinical trials, why they matter, and how to participate:

  • The basics of clinical trial participation
  • First hand experiences from actual clinical trial volunteers
  • Explanations from researchers
  • Links on how to search for a trial or enroll in a research matching program

In addition, health care professionals can read about evidence-based strategies for talking with patients about trials, print audience-tested posters to help promote trials in clinics and offices, and find other educational materials.

A Little Device Offers Hope for IC Patients—Clinical Trial Recruiting

TARIS Biomedical’s new investigational product LiRIS®, a device that delivers lidocaine to IC patient’s bladders, is now being tested in a phase 2 study, and you may be able to participate. Open now at 12 study centers across the United States and Canada, the study will ultimately include a total of 25 centers.
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More IC Research Findings

Ten summaries from the latest research now available online. See the December 29, 2011 ICA eNews. Not receiving the ICA eNews...sign up for the mailing list.

Chronic Pain Often Accounts for Marijuana Use

Zvolensky MJ, Cougle JR, Bonn-Miller MO, Norberg MM, Johnson K, Kosiba J, Asmundson GJ. Chronic pain and marijuana use among a nationally representative sample of adults. Am J Addict. 2011 Nov-Dec;20(6):538-42. doi: 10.1111/j.1521-0391.2011.00176.x. Epub 2011 Oct 4.

Analysis of a national survey including 5,672 US adults showed that marijuana users are often people in chronic pain. After the researchers controlled for sociodemographic factors, depression, and alcohol abuse or dependence, they found that there was a significant relationship between chronic pain and marijuana use. Many users of marijuana at present or who had ever used it had chronic pain during their lifetime. In addition, people who had chronic pain at the time of the survey were likely to have used marijuana at some time. On the other hand, there was no significant relationship between having chronic pain at the time of the survey and being a current user of marijuana, but that might have been a statistical problem, noted the authors. Although they noted that people in chronic pain may be using marijuana as a “maladaptive coping strategy,” it may also be that people in chronic pain may be getting needed relief from marijuana and that they may be using it to ease pain rather than for recreation. Another explanation for the last finding might be that people who use marijuana for chronic pain may not be using it today because their pain is being managed successfully with other pain treatments.

Like other chronic pain patients, some IC patients have been using marijuana to ease their pain and other symptoms. And others in states where medical marijuana is legal, or soon may be, want to know whether medical marijuana could help. Read the Fall 2011 issue of the ICA Update to learn what we know so far about marijuana's effects on IC, what IC patients have to say, and what the risks and benefits may be.

Opening Windows to the Brain: Lessons Learned in the Neuroimaging of Pain

Did you know that your brain keeps changing throughout your lifetime? This phenomenon is known as plasticity or neuroplasticity. Sometimes these brain changes are positive, but for interstitial cystitis (IC) and other chronic pain patients, pain can induce unwanted changes. For example, in fibromyalgia patients, pain prompts loss of the brain’s gray matter, producing the impaired thinking that patients know as “fibro fog.” The good news is that researchers now know that these changes are not permanent. Treating pain effectively can reverse those brain changes.

Yesterday, Sean Mackey, MD, PhD, chief of the Pain Management Division and associate professor of anesthesia and pain management at the Stanford University School of Medicine, Stanford, California, spoke at the National Institutes of Health (NIH) about the role of neuroimaging in pain research and how may help us understand individual pain experiences. Dr. Mackey’s research team uses real-time functional magnetic resonance imaging (fMRI) to diagnose and measure pain in an objective way. This neuroimaging approach is advancing our understanding of pain and offers hope for new treatments and biomarkers.

As so many IC patients are aware, pain control is not one-size-fits-all. Different people react very differently to pain and pain treatment. That’s mainly because of genetic differences, said Dr. Mackey, although gender and ethnicity can also play roles. Neuroimaging that shows pain turning off in the brain could help researchers design pain treatments for specific conditions or clinicians tailor pain treatment for individuals. This technology may be the next big step in the development of personalized medicine.

Thanks to the National Center for Complementary and Alternative Medicine (NCCAM) and the National Institutes of Health (NIH) for sponsoring this lecture.

34th Meeting of the Advisory Committee on Research on Women’s Health

The National Institutes of Health recently held their 34th meeting of the Advisory Committee on Research on Women’s Health—and interstitial cystitis (IC) was mentioned frequently! There was also a significant discussion of co-morbid chronic pain conditions which specifically included IC and vulvodynia. The Committee noted that pain is such an important issue for all of women’s health, because many pain conditions disproportionately affect women. Another important topic of discussion was Specialized Centers of Research (SCORs). At the University of California, Los Angeles (UCLA), the NIH SCOR in Neurovisceral Sciences and Women's Health addresses a select number of diseases, including IC. IC was specifically mentioned during this presentation as an important area of SCOR research.

Researchers, take note: In a discussion of funding, the Committee mentioned that the Office of Research on Women’s Health (ORWH) funded more grants than ever before, but must continue to focus its efforts and spend wisely. They spoke about grants and contracts funded across the National Institutes of Health (NIH) and across the Department of Health and Human Services (HHS), including Advancing Novel Science in Women’s Health Research (ANSWHR) grants.

Keeping NIH Research Focused on IC

Last month, Executive Director Barbara Gordon participated in a steering committee meeting of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, a multi-site, five-year research study sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH).

The research team is grateful to all those patients who are participating in this study. They appreciate everyone’s willingness to go through the many surveys and tests required for them to collect information on IC symptoms and living with IC.

At this point, researchers are beginning to analyze the data with hopes of developing a better understanding of why the symptoms of IC are different for different patients. The team is starting the process of identifying different subgroups (phenotypes) of people with IC. Last spring the ICA reported on the release of the first-ever IC clinical treatment guidelines released by the American Urological Association (AUA) guidelines. The MAPP research team is putting the AUA guidelines to a test with the intent of developing a better understanding about what treatment options are best for the different subgroups of IC patients.

MAPP is in the third year of a five year funding cycle. Though many of the sites are done recruiting, there are some opportunities for IC patients to get involved with this important research. In particular, researchers are trying to find women who have been diagnosed with IC for less than two years and more men with IC. Check out

More IC Research Findings

Twelve summaries from the latest research now available online. See the September 29, 2011 ICA eNews. Not receiving the ICA eNews...sign up for the mailing list.

“Imagine No IC” Call for Proposals

The ICA “Imagine No IC” Research Program is soliciting proposals in the following areas:

  • Epidemiology of interstitial cystitis: Special interest in studies on the burden of disease
  • Etiology of interstitial cystitis
  • Serum or urine markers
  • Potential IC treatment modalities
  • Neurophysiology
  • Pain management
  • Pregnancy and IC

Applications are due September 30, 2011. Learn more about the proposal requirements.

The ICA Pilot Research Program began in 1985 and to date, the ICA Pilot Research Program has funded over 70 IC research projects, totaling more than $1 million.

  • Donations for this research program are collected through the IMAGINE NO IC campaign. Please donate today.
And the Winner is…ICA “Imagine No IC” Pilot Program Awards

Three scientists are working to help solve the mystery of IC—and your donations to the “Imagine No IC” research programs enables them to do this work!

An IC biomarker is a crucial key in helping to definitively diagnosis IC and in developing targeted treatments. Two of this year’s awardees are conducting hopeful biomarker research projects:

    • Tony Buffington, DVM and his team from Ohio State University, as previously reported by the ICA, are evaluating a rapid biomarker-based method for differentiating IC from overactive bladder (OAB). Initially results on a small group of patients are promising. This test shows promise for helping doctors to assess the severity of IC symptoms.
    • Jayoung Kim, PhD with Cedars-Sinai Medical Center in Los Angeles, CA, is working on understanding the mechanism of degeneration of bladder epithelial cells that occurs in IC patients and identifying biomarkers that could be used for diagnostic evaluation and treatment. His work draws upon the existing body of literature about antiproliferative factor (APF).

To help answer key questions about IC, John Warren, MD and his team from the University of Maryland in Baltimore are continuing their work on the Early History of Incident Interstitial Cystitis (EPIC) study. This grant period, researchers will answer the following research questions:

    • Are there urogenital and systemic symptoms that predict IC?
    • What baseline factors predict improvement in IC?
    • How does quality of life change from before to after the onset of IC?
    • Is IC truly a heterogeneous condition?

The Interstitial Cystitis Association (ICA) Pilot Research Program began in 1985. Donations for this research program are collected through the IMAGINE NO IC campaign.

July 2011 IC Research Findings

Pain Changes the Brain...But Pain Treatment Changes It Back. Twenty summaries from the latest research now available online. See the July 28, 2011 ICA eNews. Not receiving the ICA eNews...sign up for the mailing list.

Coming Soon Pregnancy Survey Results
Find out the results thus far of the ICA’s 2011 pregnancy survey in the next issue of the ICA Update, which will be on its way to members in just a few weeks. In the article “IC and Pregnancy: Crying for Attention,” survey results give a better handle on what IC patients can expect during pregnancy and breastfeeding.

    • If you’re not a member, join now and you’ll receive this issue. With a donation of $45 or more, you’ll receive four issues of the ICA Update.

    • If you didn’t see our special Winter 2011 issue, Baby Talk, buy it from the ICA Store. (Members receive a 50% discount on all items.) Read about the treatments you can use (often more than your doctor may think), ways to stay well-nourished and comfortable during pregnancy, and the latest research on the heritability of IC.

We look forward to more analysis of the survey information you contributed to. It’s bound to help researchers, providers, and you learn more about pregnancy and IC!

Substitute "Urothelium" for "Skin" & You Get Hope

That “skin itself may be the ignition point in neuropathic pain” was the key takeaway from a study published in the June issue of the journal PAIN. A summary, published by, reported that Quanzhi Hou, MD, Philip J Albrecht, PhD, and other researchers found that individuals with painful conditions have lower levels of calcitonin gene-related peptide (CGRP), a compound known to play a role in the transmission of pain. CGRP was once thought to come only from sensory nerve fibers, but the researchers found an alternative form of CGRP produced by skin cells themselves.

This research supports previous studies done by this team—in 2009 they posed the theory that that a separate skin sensory system may hold the underlying cause of fibromyalgia and other “pain of unknown sources.” This thinking may offer more insights about IC, too. Substitute "urothelium" for "skin" and this discovery may offer new clues about changes in the bladder lining found with IC and a focus for additional treatments!

Want to read the original pain research? Here’s the reference: “Keratinocyte Expression of CGRP beta: Implications for Neuropathic and Inflammatory Pain Mechanisms,” Pain, June 6, 2011, by Quanzhi Hou, MD, Philip J Albrecht, PhD, et al.

Research on IC Symptoms and Treatment

We dug through the latest research findings and find new information—and new hope.

    • Abnormal Tamm-Horsfall Protein Shows May Be IC Biomarker
    • IC Symptoms Are Widespread and Misdiagnosed
    • BACH Study Links Hysterectomy with IC
    • Both Pain and Urgency Get You Up at Night
    • Rates of Depression, Panic Attacks High with IC
    • Is Chronic Pelvic Pain a “Functional Somatic Syndrome”?
    • Internal Massage Tool Allows At-Home Treatment
    • Hyperbaric Oxygen May Offer Long-term Relief
    • Drugs Targeting Purinergic Receptors Hold Promise for IC
    • How You “See” Pelvic Pain Could Be Treatment Target

Read about these and other newly published IC research studies in June 23rd issue of the ICA eNews.

Glad to have access to these great research summaries? Please donate today and keep your IC news coming!

Keep the momentum going. Continue ongoing efforts!
Help us continue the fight to advocate for IC patients, secure dedicated NIH funding, serve as a central hub for IC patients and healthcare providers, and fund promising scientific research.

Two Studies on Food and Drink and IC

A review of the June 2011 medical literature found two studies newly published on IC and food and drink. One study, conducted by University South Florida researchers, we’ve reported about before. This survey of IC patients provides insights on common diet triggers and IC. The second discusses links between tea consumption and IC.

    • Read about these and other newly published IC research studies in June 23rd issue of the ICA eNews.
    • Help us to continue to provide these ongoing news updates, donate today and keep your IC news coming!

ICA @ AUA Tuesday, May 17

A day hasn’t gone by here at the American Urological Association’s (AUA’s) annual meeting without IC education or research that could spell insight into and help for IC—even when there were no scientific sessions devoted to IC.

ICA @ AUA on Monday, May 16

How long has it been since you heard the word breakthrough?

Today was a big day on interstitial cystitis (IC) at the American Urological Association (AUA) annual meeting, with ICA Medical Advisory Board member Rob Moldwin, MD’s popular course, two podium sessions devoted entirely to IC, and big news that didn’t even come from an IC session. There were studies about markers, IC physiology, phenotyping and etiology, genetics, and new treatments. On our website, you’ll soon be able to read a summary of every study related to IC. Here are some of the highlights of this exciting day in Washington, DC.

ICA @ AUA on the Weekend of May 14 & May 15

Washington, DC—The largest world meeting for urologists, the American Urological Association meeting, has been under way for only a day here in Washington, and already, there’s news about IC.

Clinical Study Seeks IC Patients—Both Men and Women Between 18 and 65 Years of Age

Name of Study: An Investigator Initiated, Randomized, Double-Blind, Placebo-Controlled Study Evaluating the Efficacy of Humira® (adalimumab) for the Treatment of Interstitial Cystitis(IC)

Mast cell activation with the release of tumor necrosis factor (TNF) may mediate this bladder inflammation. Humira® (adalimumab) is a medication that blocks the effect of TNF. Humira® (adalimumab) is FDA approved for the treatment of rheumatoid arthritis, psoriasis, ankylosing spondylitis, and Crohn's disease. These diseases are similar to IC. In this study, the hypothesis being tested is that Humira® (adalimumab) will show efficacy at reducing the symptoms of IC.

Vibration Therapy: Can Reduce Pain

You may recall that the ICA reported on a study conducted about the effectiveness of musical vibrations in pain management in the Winter 2010 ICA Update. George Patrick, PhD, past director of recreational therapy in the Department of Rehabilitation Medicine at the National Institutes of Health Clinical Research Center, looked at whether vibroacoustic music could reduce pain and other symptoms. In one study, he used commercially available recliners customized to deliver vibroacoustic music—both ear-level stereo sound and tactile vibrations that allowed the body to feel music that is normally only heard. The results were startling: patients in pain had a 53% reduction in pain intensity, a 58% reduction in tension-anxiety, and a 49% reduction in depressed mood.

Another study out of the University of Florida further supports the value of vibration therapy in pain management. This group of researchers found that good vibrations can help control chronic pain. Scientists evaluated how 29 fibromyalgia (FM) patients and 19 people with neck and back pain responded to vibrations produced by a stimulator. The vibration therapy was found to reduce pain by 40% in all of the pain patients.

There’s a great summary on including quotes from some of the researchers. “The vibration truly represents an analgesic effect,” says Dr. Roland Staud, a professor of rheumatology and clinical immunology in the University of Florida College of Medicine. “This is exciting because it is something that provides pain relief that is not associated with great cost.”

The journal article is also available online: “Attenuation of experimental pain by vibro-tactile stimulation in patients with chronic local or widespread musculoskeletal pain,” Staud R, et al. European Journal of Pain, online Feb 22, 2011

Potent APF Blockers May Stop IC

If you’ve been following the research about antiproliferative factor (APF), you know that this peptide prompts bladder lining damage. Now, the Maryland research team led by Susan Keay, MD, PhD, Division of Infectious Diseases, University of Maryland School of Medicine, has found some APF derivatives that are potent blockers of APF and could become IC treatments. Specifically, what APF does is decrease the ability of bladder lining cells to proliferate and the cells’ ability to stick together tightly, allowing fluids to get through between cells (making the lining “leaky”). The research team screened APF derivatives for the ability to block antiproliferative activity and normalize the “leakiness,” and found two that they said have potential for treatment.

SUFU 2011: Updates on RICE, BACH, MAPP, APF

ICA report from Phoenix, Arizona—IC was a major focus of the Society for Urodynamics and Female Urology meeting here, especially about the epidemiology of IC. We are—and will be—learning much more about who gets it and when, the care patients are getting, how IC affects patients’ lives, and the connection with other health conditions. The meeting also provided a glimpse at what the Multidisciplinary Approach to Chronic Pelvic Pain research will yield, what and some maverick ideas about what may kick off IC and how to treat it.

“And it all wouldn’t have happened without the work of the ICA, said many researchers who thanked the ICA for bringing the attention and research dollars to the work to conquer IC.”

The Rand IC Epidemiology (RICE) study already helped us learn that from 3 to 8 million US women have IC symptoms and may have IC, but Sandra Berry from the RAND Corporation told attendees here about much more that RICE information is telling us. About a third of the women got their IC diagnosis from a nonurologist and around a fifth by a urologist. As we might have expected, the data showed that women got many diagnosis and saw many doctors over the years.
More Federal Funds to Dedicated IC Research

In 2010, Lauren Snyder, a 29-year-old special needs teacher from New Jersey, submitted written testimony to the Congressional Defense Appropriations Subcommittee on IC. Ms. Snyder encouraged dedicated IC funding in the Department of Defense (D0D)’s Peer-Reviewed Medical Research Program (PRMRP), noting that this program is an indispensable resource for studying emerging areas in IC research, such as prevalence in men, the role of environmental conditions such as diet in IC development and diagnosis, barriers to treatment, and IC awareness within the medical military community.

As a testament to the power of Lauren’s story and other advocacy efforts of the ICA, we were asked to nominate an IC patient to participate in review of the PRMRP grant proposals—and the ICA’s nominee, Judi Buckalew, was selected! Judi served on multiple committees, offering her unique insights as a patient with a chronic condition to the grant award decision-making process.

And, this month the DoD announced that Dr. Meredith Robbins, a visceral pain researcher with the University of Alabama at Birmingham, received grant funding from the DoD PRMRP to study IC pain.

Our thanks to Lauren and all of the IC advocates who contributed to this successful advocacy effort. Great job!

FDA Halts Anti-NGF Pain Medicine Trials

Safety concerns prompted the US Food and Drug Administration (FDA) to halt Phase II trials of Johnson & Johnson's potential new interstitial cystitis pain medication. Concerns that fulranumab and other anti-nerve growth factor (NGF) medicines may be related to a rapidly progressing osteoarthritis-like condition known as osteonecrosis resulted in a temporary suspension of NGF trials being conducted by Johnson& Johnson, AstraZeneca PLC.and Regeneron Pharmaceuticals. Preliminary results of the Tanezumab trials, a similar product being tested by Pfizer have produced clinically significant reductions in pain. In an email to the FDA, Johnson & Johnson committed to finding a resolution to this issue.

Pain is a Disease

“Pain is not a symptom, pain is a disease” was the strong message of a two-day conference at the National Institutes of Health. Pain and Musculoskeletal Disorders: Translating Scientific Advances into Practice brought together international experts in a broad range of domains in the pain field. Daniel J. Clauw, MD, University of Michigan Neurologist and Interstitial Cystitis Association (ICA) Medical Advisory Board Member was on the planning committee of this meeting.

Senator Harry Reid on Interstitial Cystitis

Senator Harry Reid educated colleagues about interstitial cystitis (IC) Tuesday during a discussion about the 20th Anniversary of the NIH Office of Research on Women’s Health (ORWH). Speaking in support of a resolution proposed by Senator Barbara Mikulski to recognize the tremendous role that ORWH plays in advancing scientific research on women’s health, Mr. Reid highlighted IC as an example of a condition that primary affects women.

Can Quitting Smoking Help Ease IC Pain?

Smoking can worsen symptoms of chronic pain according to David O. Warner, MD and his research team from the Mayo Clinic College of Medicine in Rochester, MN. In the October 2010 issue of Anesthesiology the team reported that nicotine and other chemicals found in cigarette smoke increase pain-related conditions such as back pain. Smokers were also found to be more sensitive to pain stimuli and to have higher rates of depression. Of note also is that the interaction of nicotine with receptors in the nervous system can negatively impact sleep, anxiety, and cognitive processes.

The authors conclude that there is much more to learn about the association of pain and smoking. They also suggest that healthcare providers weigh the special treatment needs of pain patients who smoke. However, the researchers bring home the message to quit smoking! Download the article online at

French Urology Journal Puts Focus on Chronic Pelvic Pain

In its special report from the Association Française d’Urologie (AFU) 2010 meeting, the French journal Progrès en Urologie published 46 articles in its November issue on chronic pelvic and perineal pain. The AFU has made a commitment to improving chronic pelvic pain management in urology and developing means of evaluating professional practices. The authors of the article on optimizing urologic care pointed to the need to develop professional guidelines and initial and continued training for providers and to apply professional practice assessment and accreditation in chronic pelvic pain care.

Out of Pocket Medical Costs for IC

As of November 4, 2010, nearly 400 (386) individuals had responded to a poll asking about their highest out of pocket cost for healthcare.

Clinical Trial Seeking IC Patients
Clinical Research Study


You may have seen earlier postings. But, we wanted to remind you that a pharmaceutical company is enrolling volunteers for a clinical research trial that is studying the safety and effectiveness of an investigational medication to see if it can help to reduce chronic pain associated with interstitial cystitis and/or painful bladder syndrome.

New Research Finds IC Diet Not Need to Be SOO Restrictive

A cross-sectional study conducted by the University of South Florida found that the IC diet does NOT have to limit the majority of foods. Based on a web survey of 598 members of the Interstitial Cystitis Association (ICA), IC patients may need to avoid citric fruits, tomatoes, coffee, tea, carbonated and alcoholic beverages and spicy foods. Researchers Stuart Hart, MD and Rene Bassaly, DO also concluded that IC patients may be able to reduce food sensitivities by consuming baking soda or Prelief prior to eating one of these trigger foods.

This study about interstitial cystitis (IC) and diet was on the agenda of the American Urogynecologists Society Annual Meeting held September 30 to October 2, 2010 in Long Beach, California.

IC and Celiac Disease Overlap for Some

Twelve percent of interstitial cystitis (IC) patients report being diagnosed with both interstitial cystitis (IC) and celiac disease, in an online quick poll answered by 1,000 participants and sponsored by the Interstitial Cystitis Association. This supports the link between IC and diet.

IC Advocates, Landmark IC Trial Recruiting

Interstitial cystitis (IC) patients—both men and women—here’s a unique opportunity! A national, multi-site study is taking a comprehensive look of what is happening in IC; however, they cannot do this without our help.

Earlier this month, Executive Director Barbara Gordon was invited by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH), to attend a MAPP Research Network steering committee meeting. The key message—these scientists, doctors, nurses and study coordinators are looking for patients who want to participate in this landmark IC study. It’s a chance to really make a difference and also get a comprehensive health check!

There are six study sites around the nation recruiting patients over 18 years of age. Contact one of the study coordinators to learn if you are eligible to participate. Phone and email numbers for MAPP study coordinators are on the MAPP Research Network home page. Researchers noted that they still have lots of spots for men and for newly diagnosed women (less than two years).

NIH Launches Health Disparities Network

The National Institutes of Health (NIH) launched a multidisciplinary network of experts to investigate new approaches to understanding the origins of health disparities (differences in the burden of disease among population groups). The goal of the network is to identify areas where interventions or policy changes can have the greatest impact in eliminating health disparities.

The University of Michigan School of Public Health, Ann Arbor, will establish the Network on Inequality, Complexity, and Health (NICH). Comprised of scientists with expertise across disciplines, including economics, biology, ecology, computer science, education, sociology, mathematics and epidemiology, NICH will be the first network to apply systems science approaches to the study of health inequities. More information on the NICH is available on the NIH website.

Recruitment for Pfizer IC Tanezumab Study Temporarily Stopped

We reported in the past few months that Pfizer is testing tanezumab which is an antibody directed against nerve growth factor for treatment of pain for many chronic conditions including IC. You may have heard that an osteoarthritis trial with tanezumab was stopped because of concerns about bone side effects. As far as we know, these side effects have not been seen in patients participating in the IC trial; however, until the question is resolved, Pfizer has stopped recruiting patients for the IC trial.

As we reported from the AUA meeting, other companies are working on nerve growth factor antibodies for pain, including Abbott Laboratories, Johnson and Johnson, Sanofi-Aventis, and Regeneron. There are various kinds of nerve growth factor antibodies for different pain conditions. The antibodies aren't all the same.

Check back for more news on the status of the IC study.

Results of ICA CAM Survey to be Presented at Pain Conferences

Complementary and alternative medicine (CAM) use by IC patients is on the agenda at two upcoming meetings of pain professionals. 

As reported in the Summer 2009 issue of the ICA Update, more than 2,100 of you responded to the ICA’s 2009 CAM Internet Survey. In collaboration with Amy Rejba-Hoffmann, CRNP and ICA Medical Advisory Board member Kristene Whitmore, MD, both with the Pelvic and Sexual Health Institute in Philadelphia, the ICA will present poster sessions this August and September at key scientific meetings with highlights of survey findings:

  • International Continence Society/International Urogynecological Association Joint Annual Meeting, Toronto, Canada 
  • American Academy of Pain Management, 21st Annual Clinical Meeting: Exploring the Science, Practicing the Art: Integrative Pain Management for Optimal Patient Care, Las Vegas, NV

Missed the report about the survey? Order a back issue of the Summer 2009 ICA Update.

Calling IC Patients to Complete Short Survey

Remember when you were diagnosed? Think back to the time when your doctor first said the name interstitial cystitis. Share this initial experience, as well as how talks with your doctor went at your 6-month follow-up appointment.

You are invited to participate in a confidential, online survey conducted by Ortho Women's Health & Urology™ about patient-doctor communication. The goal of the survey is to understand training gaps for doctors and develop educational materials to help doctors be better communicators.

AUA 2010 – Experience the Meeting Virtually!

Didn’t make it to San Francisco for the AUA 2010 conference? Experience the sessions as if you were there via webcast! View Phillip Hanno, MD discussing the preliminary AUA IC Treatment Guidelines and listen to Robert Evans, MD present initial findings on a potential new pain medicine. Go to the AUA highlights page for links to all the IC-related webcasts.

Pelvic Floor Physical Therapy – A Huge Help for Those Who Know

Over 600 people responded to the June ICA Quick Poll about pelvic floor physical therapy. Those who had tried pelvic floor physical therapy had great success, with 58% reporting that their IC symptoms improved after treatment.

Online Library of IC Research
Looking for the latest research on IC?  Every month the ICA scourers research published in medical journals and publishes the findings in plain language, as well as offers unique insights into the hope this research gives to all of us affected by IC. These reviews include summaries of journal articles indexed in MEDLINE and from other published sources. Interstitial cystitis and chronic pelvic pain literature review topics include treatments and drug discovery, social issues, epidemiology, diagnosis, etiology, medical education, and basic research.
Check out all of the “Literature Reviews” on the ICA website.

New Pelvic Pain Clinic for Women Opens at Loyola
Loyola University Health System (LUHS) has opened a clinic to treat chronic pelvic pain (CPP) in women..


ICA @ AUA — IC News Wraps Up with Marker that Could Bring an IC Test Soon

Tuesday wrapped up IC research presentations here at the American Urological Association’s (AUA’s) annual meeting with a potential new marker and more.

ICA @ AUA — IC’s Big Day

Monday was an exciting day for IC here at the American Urological Association’s annual meeting including a course on pelvic pain and IC, big news on a new drug for IC pain, a lively debate about what IC is and what to call it, another presentation of AUA’s IC guidelines, and research sessions with presentations of more than a dozen studies important for IC.

ICA @ AUA — Abuse and IC Not Connected

San Francisco—In the past few years, studies showing a correlation between abuse and IC prompted debate and controversy. Today, a new study presented here in a specialty society gathering at the American Urological Association meeting helped end the debate and move IC research to focus on something more important—finding new medical treatments to get you better.

J. Curtis Nickel, MD, presented the study by his team at Queens University in Kingston, Ontario, and other urologists from the United States and Europe at the meeting of the Society for Infection and Inflammation in Urology. They found that there was no appreciable difference in rates of childhood abuse between IC patients and controls. The difference just barely reached statistical significance and did not reach clinical significance. That should help counter some doctors’ assumption that IC is caused by the psychological consequences of abuse and that medical therapy—or different or additional medical therapy—won’t help. As one urologist who attended remarked, we can stop blaming the victim.

This research helped validate the concerns medical writer Penny Allen raised in her story published in Urology Times last year about the issue of abuse in IC patients. Allen is also the editor of the ICA Update and covers IC research and treatment news for the ICA. Coincidentally, today, Allen won the 2010 American Urological Association award in the trade journalism category for that very IC story. In her thoughtful analysis of the issue, Allen demonstrated that:

  • The rates of abuse in IC patients in published studies didn’t agree.
  • Other large studies of people abused in childhood didn’t show they had much more chronic pain later in life than people who weren’t abused.
  • Urologists who see IC patients may not have the training to help patients who reveal they have been abused.
  • The issue could be diverting much needed focus away from medical treatment and research.

ICA @ AUA: First American Guidelines for Diagnosing and Treating IC

The American Urological Association’s annual meeting just got started today at 1 pm. By 2 pm, there was already big news for IC. On behalf of the AUA’s IC guidelines committee, Phil Hanno, MD, presented the first-ever guidelines for diagnosis and treatment from the association. Dr. Hanno is also co-chair of the ICA’s Medical Advisory Board.

The guidelines will be a boon for IC patients who see doctors who don’t specialize in IC treatment and may not be aware of the medical literature that supports certain tests and treatments—or doesn’t. Notably, the new guidelines don’t support using the potassium sensitivity test as a valid one for IC, nor do they support cystoscopy with hydrodistention under anesthesia for “uncomplicated” cases, that is, cases that are not severe and don’t have many accompanying conditions, such as vulvodynia.

The guidelines emphasize conservative, noninvasive approaches to start, for example, an IC-friendly diet, physical therapy aimed at pelvic floor dysfunction, and stress management. Therapies called first-line treatments include the oral medicines amitriptyline, histamine blockers such as hydroxyzine (Atarax, Vistaril) or cimetidine (Tagamet), pentosan polysulfate (Elmiron) and bladder instillation therapy. Treatment recommends then step up through five levels, but hearteningly, no matter what level, the guidelines emphasize the importance of pain management.

Dr. Hanno emphasized that these guidelines are a work in progress and far from the final word on IC diagnosis and treatment. Furthermore, the guidelines reflect what’s been published so far in controlled trials or other trustworthy studies and sometimes on expert opinion, so they don’t necessarily include helpful treatments that IC experts are just starting to use and research.

Check out our video interview with Dr. Hanno about the diagnosis and treatment guidelines and learn more.

Severe Chronic Pain – Worse for Your Health than Heart Disease

The negative effects of chronic pain on health have been well documented by researchers. However, a new study revealed the magnitude of the long-term impact that severe chronic pain can have on your health. In 1996 a group of 6,940 individuals were recruited and surveyed about their general health and experience with chronic pain. Socio-demographic details were also collected. Ten years later, researchers linked responses from these study participants with a database of reported deaths.

Researchers successfully mapped records for 5,858 (84 percent) of participants from the original study; of those, 1,557 (27 percent) were no longer living. Results showed that chronic pain, and severe chronic pain in particular, was related to a higher risk of death compared with other health issues, including cardiovascular disease. After adjusting for socio-demographic factors, the increased risk for death due to chronic pain remained significant.
Read the original abstract.

Spreading the Word among Pain Practitioners

Medical advisory board member Robert Moldwin, MD, and the ICA's executive director Barbara Gordon and communications manager Penny Allen co-authored an article about IC for the Spring 2010 issue of Pain Practitioner, a publication of the American Academy of Pain Management (the Academy). The Academy is a non-profit organization that educates clinicians about pain and its management through an integrative interdisciplinary approach.
Read an overview of the article in the Research/Literature Review section of the ICA website.
Read full text of the article.

Sound Bites on Overlapping Conditions

Research demonstrates that people with IC may also be affected by other health issues. During the past week, news about some of these conditions made the headlines.

New OxyContin Formulation Approved

The US Food and Drug Administration (FDA) approved a new formulation of controlled-release oxycodone (OxyContin). The goal of the new formulation is to help discourage misuse and abuse. Hopefully, this will ease doctor’s concerns about prescribing to legitimate pain patients and help make the painkiller more available to patients who need this medicine.

NIDDK: Senior Scientific Advisor for Women's Urologic Health Needed

The NIDDK is seeking exceptional candidates to serve as the Senior Scientific Advisor for Women’s Urologic Health in their extramural Division of Kidney, Urologic and Hematologic Diseases. The incumbent will be responsible for developing and maintaining a research program in diseases of the female bladder and urethra, and multi-system diseases in which there is prominent involvement of the urogenital system. They will have primary responsibility for the development of new scientific research initiative concepts and for assuring that the multi-center clinical trials and studies supported by the Division are conducted in accordance with NIDDK and NIH policies. Applications are being accepted until April 15, 2010. For further information, please call 301-594-7772 301-594-7772.

Rocky Mountain High: ICA Visits New Multidisciplinary IC Clinic

The Urology Center of Colorado (TUCC), a full-service urology clinic in Denver, CO, is now accepting IC patients. This newly formed IC team includes 2 urologists who work in tandem with a multidisciplinary team of nurse practitioners, physical therapists, and dietitians. At a recent visit to the new center, ICA Executive Director Barbara Gordon, met the staff, toured the facility, gave an overview about the ICA at a nursing in-service program, and attended a patient support group meeting. For more information, see the TUCC website.

Most IC Patients Try to Exercise

During the past month, 917 IC patients shared their exercise practices with the ICA.


Last weekend the ICA joined 300 doctors, including many members of the ICA’s Medical Advisory Board, at the Society for Urodynamics and Female Urology (SUFU) conference in St. Petersburg, FL.

Calling Pain Management Providers: Online CME Evaluation – NIH Needs Your Participation

The National Institute on Drug Abuse (NIDA), one of the National Institutes of Health, is seeking feedback on a new CME program developed for pain management providers.

ICA MAB Member Daniel Carr, MD, Working on New Pain Medicine

ICA Medical Advisory Board member, Daniel Carr, MD, and Javelin Pharmaceuticals, Inc., bring news of a new pain medicine for treating mild to severe pain. The US Food and Drug Administration (FDA) has accepted the Dyloject™ (diclofenac sodium) Injection for formal review. Initial studies of this intravenous (IV) non-steroidal anti-inflammatory drug (NSAID) were done with seniors (65 years of age and older) and patients with kidney and liver insufficiency. If approved, Dyloject may offer a non-opioid alternative for patients with acute moderate-to-severe pain. Fingers-crossed that this research may offer insights into a new IC flare medicine.

Tiny Bubbles May Make You Feel Fine

Last August the ICA reported that a new liposome treatment pioneered by Dr. Michael Chancellor, showed promise in clinical trials conducted in Taiwan.

Keay’s Research Key in New IC Therapy

Susan Keay, PhD, University of Baltimore faculty and ICA Medical Advisory Board member, and Rockville-based Celek Pharmaceuticals LLC were recently awarded $159,500 to evaluate the efficacy of a new therapy for IC. This is exciting news for the IC community, which has followed the research of Dr. Keay and her scientific team for quite some time. This team identified anti-proliferative factor (APF), an epidermal growth factor, as a potential biomarker for a diagnostic test for IC. Much of the early research conducted on APF was funded by ICA Pilot Program and Fishbein Foundation grants.

VCU Researchers Demonstrate Importance of NGF in Mediating Bladder Inflammation

Researchers at the Virginia Commonwealth University (VCU) School of Medicine in Richmond, VA, further demonstrated the importance of nerve growth factor (NGF) as a potential mediator in bladder inflammation. Though this research is looking at hypertrophy, or thickening of the bladder wall, an increase in bladder mass causes symptoms similar to IC such as urinary frequency, urgency and pain. As the ICA reported in October 2009, ICA Medical Advisory Board member Robert Evans, MD, presented findings at the American Academy of Pain Management’s annual meeting of a NGF inhibitor being tested by Pfizer, Called Tanezumab, initial study findings of this NGF inhibitor produced clinically significant reductions in pain. Development of therapies based on the VCU work may lead to similar treatment options for people with IC.
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Research Opportunity: Dedicated IC Funds Through DOD

The Fiscal Year 2010 (FY10) Defense Appropriations Act provides $50 million to the Department of Defense Peer Reviewed Medical Research Program (PRMRP) appropriation to provide support for military health-related research of exceptional scientific merit.
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Foundation for Physical Therapy Accepting Applications for New Research Grant

The Foundation for Physical Therapy has issued a call for proposals for the Clagett Family Research Grant. This grant is intended specifically to fund research efforts exploring exercise interventions for older adults with multiple chronic conditions. Letters of intent are due by March 1, 2010.
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NIH Small Clinical Trial Training Course - Register Now

The FDA's Office of Orphan Products Development (OOPD) and NIH's Office of Rare Diseases Research (ORDR) have joined together to create a course entitled "The Sceince of Small Clinical Trials." The course deals with issues arising in the design and analysis of clinical trials based on small study populations. It will consist of seven 2-hour lectures beginning on Tuesday, February 16, 2010 and continuing throughout the following several weeks.
Learn more about this course.

ICA Presses NIDDK to Confirm Commitment to IC Research

In a letter dated January 25, 2010, the ICA thanked NIDDK for their current IC research efforts and the extraordinary approach to scientific research being carried out through the Multidisciplinary Approach to Pelvic Pain Research. The ICA also pressed NIDDK to confirm that funding levels of IC research will not decline in the next budget cycle.
Read Letter

NIH to Get $1 Billion More in Funding in Obama’s Proposed Budget

President Obama released his FY 2011 budget on Tuesday, February 2. According to an HHS summary, the budget requests $32.089 billion for NIH, an increase of $1 billion (3.2%) over FY 2010. Budget documents are available on the OMB Web site.

New IC Clinical Trial for Patients with Vulvodynia

A new clinical trial at Scripps Clinic in San Diego, CA is now recruiting IC patients with generalized vulvodynia for participation in a study of intravesical therapy.
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Hopeful New Treatment for Hunner's Ulcers: Triamcinolone

At the 2009 International Continence Society annual meeting, Genoa G. Ferguson, MD, a resident at Washington University, St. Louis, reported that injection of triamcinolone at the lesion sites produced significant reductions in symptoms of Hunner's ulcers.
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IC Patients More Sensitive to Pain, According to a New Study

Researchers in Italy say they have some direct evidence for central sensitization in interstitial IC. Central sensitization, which is essentially an increase of pain signals in the central nervous system, is thought to contribute to perpetuation of pain (and possibly its initiation) in the condition.
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New Oral Solution for Lyrica Contains Artificial Sweetener & Flavoring

For anyone with swallowing problems who has found relief from pregabalin (Lyrica) tablets, Pfizer now offers an oral solution form of the medicine. If you switch, proceed with caution. To help mask the bitter taste of the pregabaln, the solution contains a sweetening agent (sucralose) and artificial flavoring (strawberry). Ask your doctor about getting a sample before shifting your prescription so you can test your tolerance for these additives. Many patients report that artificial sweeteners and flavorings irritate their bladder.

Read more about the overlap between IC and Fibromyalgia.
Find out about eating with IC, and the artificial sweeteners and ingredients that IC patients report irritate their bladders.

NIH Recovery Act Funding Opportunity

The National Institutes of Health (NIH) issued a new RFA titled "Recovery Act Limited Competition: NIH Director's Opportunity for Research in Five Thematic Areas." The competition opens on February 15 and applications are due by March 15. About $80 million is expected to be available for awards under the RFA. According to NIH, "This program will support projects that address research endeavors in specific areas that will benefit from significant three-year funds without the expectation of continued NIH funding beyond this period. The research supported by the program should have high short-term impact, and a high likelihood of enabling growth and investment in biomedical research and development, public health, and health care delivery." The five thematic areas correspond to Dr. Francis Collins' earlier announced priorities: applying genomics and other high throughput technologies, translating basic science discoveries into new and better treatments, using science to enable health care reform, focusing on global health, and reinvigorating the biomedical research community.
Learn More

Planning Grant

NIH recently released a planning grant for future research. The overall objective of the Planning Centers for Interdisciplinary Research in Benign Urology (IR-BU) (P20) is to foster the establishment of interdisciplinary teams necessary for advancing understanding of symptomatic benign urological disorders. This is a general urology RFA can be applied to IC research. The grant covers $200,000 in direct costs per year for a two-year period:

Ancillary Studies Program Announcement

The NIDDK invites investigator-initiated research project applications for ancillary studies to ongoing large-scale clinical trials, epidemiological studies and disease databases supported by the Institute. Datasets are available for the ICCN, Bach and RICE studies. Goals of these ancillary study proposals should be to extend the the knowledge of the diseases being studied by the parent study investigators under a defined protocol. The proposed studies may require additional data or sample collection but may not interfere with the primary objectives of the main study. Each applicant must abide by the procedures for conducting ancillary studies established by the parent study group. See the Ancillary Studies Program Announcement (PAR-07-024). Send inquiries to John Kusek, PhD.

Neuroimagining in Urologic Pelvic Pain an Associated Disorders Conference-Postponed
This conference has been postponed until further notice.

International conference focusing on the use of neuroimaging in urologic pelvic pain and associated disorders to review and establish the current state of knowledge related to functional magnetic resonance imaging (fMRI) and other neuron-imaging modalities, with a particular focus on their use in urologic pelvic pain and associated disorders; stimulate research and clinical application in this area; foster the development of multi-specialty collaborations in utilizing these clinical/diagnostic modalities; and provide recommendations to the NIDDK for future research in advancing this area. We'll send you more details as they are released.

Rand Interstitial Cystitis Epidiemology (RICE) Prevalance Study May Extend Reach to Men

During a recent meeting with NIDDK Director Griffin Rodgers and his senior staff, Executive Director Barbara Gordon and ICA Medical Advisory Board Member Dr. Dan Brookoff received an update on the RICE project. Perhaps you recall that RAND researchers presented findings at the American Urological Association meeting. In case you missed it, here's the Podcast (starts at 13:00) about the study which found that 3 to 8 million women in the US report IC symptoms. NIDDK and RAND are investigating the feasibility of repeating the study to measure the prevalence of IC symptoms among men. Based on experiences with other studies, this may prove more challenging because survey response rates are generally lower among men. More to come on this.

Taris "Pretzel" Promising Clinical Trial Results

Taris Biomedical announced the successful completion of a Phase 1 clinical study of its new drug delivery system. Phase 1 studies are proof of concept tests, evaluating the safety and tolerability of medical devices. This study establishes the proof-of-concept for LiRIS (Lidocaine Releasing Intravesical System), a small, soft, pretzel-shaped tube designed to provide sustained release of pain medicines and other drugs directly to the bladder. Taris plans to continue clinical trials and hopes to release this new treatment option for IC in 2010.

NCCAM's 10th Anniversary Research Symposium

The National Center for Complementary and Alternative Medicine held their 10th Research Symposium on December 8th, 2009. Alison Shaffer, ICA Social Marketing Manager, attended to get updates on the latest CAM research and how new findings might be relevant to IC treatments. Researchers presented findings on a variety of CAM studies and discussed topics including natural products, mind-body medicine, and the intersection of behavioral science and integrative medicine. You can view the entire symposium or listen to a podcast of the event here.

Calling all Researchers: New Pain Funding Opportunity from NIH

A new funding opportunity announcement (FOA) was released soliciting grant proposals from researchers in the pain field to stimulate and foster a wide range of basic, clinical, and translational studies on pain. Read More

$1.8 Million Awarded for Pain Research

Researchers from the U of Michigan received $1.8 Million to develop a new therapy for neuropathic pain, which is a condition in which patients experience pain due to damage to a nerve without obvious injury to the tissue.
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Pain Research Yielding Help for IC Patients

At the American Academy of Pain Management’s annual clinical meeting in Phoenix this month, providers learned how to integrate the latest traditional and alternative therapy into their practices.
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The FDA de-mystifies the investigational drug process

On October 15 the FDA held a day-long public workshop to de-mystify the FDA Center for Drug Evaluation and Research’s (CDER) Investigational New Drug (IND) process. Find PowerPoint presentations from all presenters and more at the event website.
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New NHC-NIH Collaborative Research Database
The National Health Council, in partnership with the NIH Office of Extramural Programs, is developing a database that would make information on unfunded but worthwhile NIH research proposals available to the NHC's members and other potential funders of health research.

Site testing will begin in October 2009. Once testing is complete, NIH will notify all non-funded applicants deemed significant and of scientific and technical merit of the availability of the database. The plan is to fully launch the database in January 2010.
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Watson Pharmaceutical Uracyst Trial

Watson Pharmaceuticals is currently recruiting participants for a clinical trial studying the safety and effectiveness of Uracyst. Women who are 18 years of age and have a diagnosis of IC/PBS may be eligible to participate.
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Liposome Patient Trial Shows Promise for New Treatment

The first trial of liposomes for IC in actual patients has just been published, taking a giant step forward toward getting a helpful new therapy to you.
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UraCyst to be Available in Italy

Stellar Pharmaceuticals of Canada has signed a licensing agreement with Sigmar Italia, a specialty pharmaceutical sales and marketing company, for the distribution and sale of Uracyst in Italy.

Uracyst is a sodium chondroitin sulfate solution that is thought to work by replenishing the glycosaminoglycan (GAG) lining of the bladder (the protective barrier that guards the bladder against irritants and toxins in the urine).

While Uracyst is currently not FDA-approved for use in the United States, it is available in Canada and in several countries throughout Europe, and is awaiting regulatory approval in China and Israel.
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Bringing New Treatments to Market

Ever wonder why it seems to take such a long time for new IC medications to become available? Here’s the scoop!
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NVA Funds First Vulvodynia Treatment Registry

The NVA awarded Drs. Georgine Lamvu, Denniz Zolnoun and Lori Boardman grants to develop and implement the first-ever Vulvodynia Treatment Registry. Launching in fall 2009, this multi-site registry will allow researchers to study the efficacy of multiple treatments, including, but not limited to, topical medications (eg, lidocaine, gabapentin), oral "pain-blocking" medications (eg, tricyclic antidepressants, anticonvulsants, and muscle relaxants), physical therapy, and surgery. Women receiving medical care at the University of North Carolina, University of Central Florida, and Florida Hospital will be eligible to participate in the Registry.
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New Drug Delivery Option

TARIS Biomedical, a new pharmaceutical company, announced plans to develop a lidocaine-releasing intravesical system (LiRIS). IC is the first area of focus for LiRIS, which releases a sustained dose of lidocaine (found to decrease IC symptoms for many patients) directly into the bladder. The new device, which is inserted via cystoscope or catheter into the bladder, floats in the urine as the medicine is released across several weeks. The device is removed by conventional, cystoscopically. Scientific advisory staff include leading IC physicians, such as ICA Medical Advisory Board member, Robert Moldwin, MD. For more information, go to TARIS Biomedical and click on the “Technology” tab to see a snapshot of how the device works.

Two Surveys Need Your Help
If you haven’t already taken these two surveys, please do!
  • University of South Florida (USF) nutrition survey: For those of you who gave up before in frustration, USF reports the online survey tool is now working well. USF is asking people with IC, 18 years or older, to participate in the online survey. The goal of the study is to learn more about the impact of diet on IC. Please allow 15 to 30 minutes to complet e the survey.
  • Experience with standard treatments: Have you wondered whether to have tests and treatments your urologist has recommended for chronic IC symptoms? If you have not yet filled out this survey it is not too late to do so! Also review responses from the first 750 patients, many from the United Kingdom. To date about 1,500 people have reported their experience with standard treatments like hydrodistention, instillations, dilation, neuromodulators, surgeries, and 61 prescription drugs. See articles published in the journal UROLOGY, National Women's Health Network, and Our Bodies Ourselves blog.
IC Experts Discuss Merits of Current IC Diagnostic Options and Treatments
The International Journal of Clinical Practice features Diagnostic Options for Early Identification and Management of Interstitial Cystitis ⁄ Painful Bladder, in its December 2008 issue. Written by two renowned IC experts, John B. Forrest, MD, of Urologic Specialists of Oklahoma in Tulsa, and Robert M. Moldwin, MD, of the Smith Institute for Urology, New Hyde Park, New York, who is a member of the ICA’s Medical Advisory Board, this review article reaches a worldwide readership of clinicians.

The article discusses the merits of current IC diagnostic options including screening tools, cystoscopy with hydrodistention, bladder biopsy, the potassium sensitivity test, intravesical anesthetic challenge, urodynamics, and urinary markers. A section on IC treatment options is also included, and discusses oral medications, bladder instillations, dietary modification, and physical therapy.

Drs. Forrest and Moldwin emphasize the importance of early diagnosis and treatment, as well as good follow-up. They point out that early diagnosis and treatment can bring about better results for the patient, but that current available treatments can take time to work. They prescribe education, reassurance, and empowerment from the healthcare provider to encourage patients to participate in and stick with their treatment plan. They also argue that multimodal therapy with an emphasis on patient education can help ensure success in treating IC.

New Fibromyalgia Medicine -- Special Considerations for IC

In January 2009, the FDA approved the antidepressant milnacipran (Savella) for the treatment of fibromyalgia, one of the frequently diagnosed related conditions in people with IC.  In clinical trials, the drug reduced pain intensity by about 50 percent, and fatigue.  A norepinephrine serotonin reuptake inhibitor (NSRI), Savella contains a higher ratio of norepinephrine to serotonin activity than serotonin-norepinephrine reuptake inhibitors (SNRIs), which is thought to make it more active against pain.  Savella is the third prescription medicine to be FDA approved for the treatment of fibromyalgia.  Pregabalin (Lyrica), an anticonvulsant, was approved in June 2007 and Cymbalta in June 2008. Savella has been available in Europe and Asia for many years, and is licensed by Pierre Fabre and Cypress Bioscience, Inc. and Forest Laboratories, Inc.  A word of caution for people with IC: Dysuria (painful or difficult urination) is a possible side effect of Savella.  Also, the effectiveness of these newer classes in IC is still being explored.  Some patients report that these newer types of antidepressants, such as duloxetine (Cymbalta), escitalopram (Lexapro), bupropion (Wellbutrin), and sertraline (Zoloft), help their IC, while others report increased IC symptoms.
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Novel Overactive Bladder Treatment Receives Approval

The FDA approved Watson Pharmaceutical’s GELNIQUE (oxybutynin chloride) Gel 10% for the treatment of overactive bladder (OAB) with symptoms of urge urinary incontinence, urgency, and frequency.  It is the first and only topical gel of its kind for OAB.  The GELNIQUE Gel’s active ingredient, oxybutinin, a type of anticholinergic/antispasmodic commonly found in oral OAB treatments, is delivered through the skin (transdermally), thus reducing some of the bothersome side effects (dry mouth, constipation) known to occur with the use of oral anticholinergics. GELNIQUE is a quick-drying, clear and colorless, fragrance-free hydroalcoholic gel that is applied once daily to the thigh, abdomen, upper arm, or shoulder and delivers a consistent dose of oxybutynin through the skin over a 24-hour period.  Because of GELNIQUE Gel’s high safety and tolerability during clinical studies, the medicine is now being considered first-line therapy for OAB.
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Japanese Urological Association Publishes IC Guideline

Japanese Urological Association’s new IC Guidelines were recently published in the International Journal of Urology. Japanese Guidelines for Diagnosis and Treatment of Interstitial Cystitis by Homma, Ueda, Ito, Takei, and Tomoe is a very detailed, comprehensive document that you can access for free online.  Members of the Society of Interstitial Cystitis of Japan developed the guidelines, which are endorsed by the Japanese Urological Association and aimed both urologists and other women’s healthcare professionals. The English translation in this journal is a shortened version of the Japanese guideline.

The Japanese IC Guidelines propose eventually adopting the new term “hypersensitive bladder syndrome” to describe IC symptoms and include IC patients with and without pain. The guidelines define IC as:

  • lower urinary tract symptoms such as urinary frequency, bladder hypersensitivity, and/or bladder pain
  • bladder pathology proven endoscopically by Hunner’s ulcer and/or mucosal bleeding after over-distention
  • exclusion of confusable diseases such as infection, malignancy or calculi of the urinary tract

Because the IC definition includes abnormalities in the bladder, a diagnosis still requires cystoscopy and hydrodistention in Japan. Biopsy isn’t required, although it can help rule out cancer. But the authors were careful to recommend that biopsy should be done after hydrodistention to avoid bladder rupture. The guidelines call the potassium sensitivity test limited in diagnostic value because of the high rate of false negative and false positive results.

The American Urological Association (AUA) is currently working on IC guidelines for the United States with the goal of 2010 launch. ICA Executive Director Barbara Gordon and several of the ICA’s Medical Advisory Board are members of the AUA steering committee. We are hopeful that these various guidelines from different countries and professional associations will eventually lead to an international concensus regarding IC Guidelines.

Bladder Instillation Receives US Patent

On August 19, Urigen Pharmaceuticals announced that the US Patent and Trademark Office issued the first patent for the use of URG101, an investigational, bladder instillation treatment for painful bladder syndrome/interstitial cystitis (PBS/IC). Patent number US 7,414,039 broadly covers the use of the URG101 product in the treatment of PBS/IC. The term of the patent extends into 2025.

URG101 is a bladder instillation (requires catheterization) that consists of alkalinized lidocaine (an anesthetic) and heparin (thought to help to repair/soothe the bladder lining). The ingredients in URG101 have been mixed together to form bladder instillations for several years. Urigen's URG101 combines these two active ingredients in a premixed formula, making it more convenient for IC health providers.
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New Medical Device for Pain Receives FDA Approval
Advanced Neuromodulation Systems (ANS), a division of St. Jude Medical, Inc., recently announced US and European approvals of the Eon Mini, the world's smallest, longest-lasting rechargeable neurostimulator to treat chronic pain of the trunk or limbs and pain from failed back surgery. It should be available in both the US and Europe in late 2008.

The Eon Mini has the longest-lasting battery life of any rechargeable spinal cord stimulation (SCS) device in its class. It is the only small rechargeable neurostimulator to receive a 10-year battery longevity approval by the FDA. While not approved specifically for interstitial cystitis, neuromodulation devices such as this have been tried and tested in people with IC with varying degrees of success.

Visit these sites to learn more about Eon Mini:
Fibromyalgia Medicine Receives FDA Approval -- Special considerations for IC patients
In early July, Eli-Lilly announced that it received FDA approval for the use of the oral antidepressant Cymbalta (duloxetine) in treating fibromyalgia. Cymbalta belongs to a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors) and is already FDA-approved for use in depression, generalized anxiety disorder, and diabetic neuropathy.

This is the second drug to be approved to treat fibromyalgia in just over a year, which is good news for those with IC who also have fibromyalgia, which is known to co-exist with IC. Pfizer’s Lyrica (pregabalin), an anticonvulsant which was the first-ever medication approved for use in fibromyalgia, received FDA approval in June of 2007.

For some people with IC, Cymbalta may cause urinary retention. In fact, it is approved in Europe to treat stress urinary incontinence in women (under the trade-name Yentreve), although at much higher doses than those recommended for fibromyalgia. For those who find this drug helpful for their IC and/or fibromyalgia, lower doses may help avoid any urinary side effects.
  • For more information on Cymbalta, please click here.
  • For more information on Lyrica, please click here.