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Social Media Outreach Leads to Discovery of Biomarker for Interstitial Cystitis Diagnosis


Social media is more than a way to connect with friends, access news or information, or watch entertaining videos. It’s now a proven method of conducting medical research.

Researchers in the Urology department at Beaumont Hospital, Royal Oak, Michigan collaborated with the Interstitial Cystitis Association to use social media to recruit research volunteers for a study leading to the development of a new urine biomarker for the diagnosis of interstitial cystitis. IC causes recurring pelvic pain, pressure or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency. In extreme cases, patients with IC may urinate 60 times a day or more.

The social media research exceeded expectations. Within just two weeks, 454 women and men from 46 states participated in the study, watching a YouTube video and completing an online survey. Qualified participants were sent a prepaid return shipping container to provide a urine sample. The container included preservatives to maintain protein and nucleic acid in the urine at room temperature.

Analysis of the samples led to the discovery of three proteins that were highly statistically different for research participants with IC with ulcer versus those without ulcer. This was then used in a machine-learning program to accurately classify patients with the disease.

The research was presented May 13 at the American Urological Association meeting in Boston, the largest meeting of urologic specialists in the world.

IC is a disease that affects more than 12 million people in the U.S. and currently does not have a single, objective laboratory test for diagnosis.

Laura Lamb, Ph.D., urology research scientist at Beaumont, said “Our goal was to develop a simple urine-based test that identifies IC patients with bladder pain syndrome who have ulcerative IC and a bladder permeability defect. The test had to be developed and validated in a large number of samples collected beyond the referral area of our single academic medical center.”

Participants were recruited through a collaboration with the Interstitial Cystitis Association, which has an active presence across several social media platforms.

“IC is ideal for social media research,” said Kenneth Peters, M.D., chief of Urology, Beaumont, Royal Oak. “The IC community is a motivated patient group because of their poor quality of life. They are relatively younger compared to patients with other chronic diseases; as such, they may be more comfortable and familiar with the internet and social media.”

The use of social media is an emerging approach for medical researchers to rapidly collect, process and interpret data, generating support for medical advances that would otherwise be impossible due to research funding constraints and the large number of participants needed for medical research.

Michael Chancellor, M.D., director of Neurourology at Beaumont, Royal Oak, predicts that, “As the research community discovers this new role of social media, medical research may no longer be confined to academic centers, but will be a collaboration of key stakeholders across the world.”

“Our study achieved diversity in sample source collection from across the U.S. and engaged many national stakeholders using social media,” said Dr. Chancellor. “And the outcome of the study is significant – the development of a bladder permeability risk score that is the first validated urine biomarker test for interstitial cystitis/bladder pain syndrome.”

The research was supported with funding from the Taubman Family through the Taubman Interstitial Cystitis Research Program.

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