A Letter from Laura


Dear Member of the ICA Community,

The purpose of this e-mail is to remind you about your invitation to participate in the “Quality of Life & IC Study.” For those of you who have already participated, thank you very much for your participation. While your input was invaluable, please note that there is no compensation for participation. Also, you will not receive any additional information, or requests for further information, via e-mail or phone. If you have questions about the study, please contact Laura Santurri (lsanturr@kent.edu) directly.

If you have not yet filled out the survey, you can still do so. You are eligible to complete the survey if you have been diagnosed with IC at some point in your life, and you are 18 years of age or older.

The purpose of this study, which consists of a one-time, online anonymous survey, is to gain a better understanding of the types of things that impact quality of life in people living with IC. The survey asks questions about your perceptions of quality of life, social support, stress, your ability to do the things that you need/want to do in life, disease symptoms and severity, and basic demographics. The survey is short and takes no more than 30 minutes to complete. The survey is anonymous, as it does not ask for any identifying information.

This study is being conducted by Laura Santurri, MPH, CPH, a doctoral candidate in Health Education and Promotion at Kent State University (KSU) and with the support of the Interstitial Cystitis Association (ICA). In addition to being an IC patient for the past 14 years, Ms. Santurri has also been involved in IC support group leadership and patient advocacy for the past decade, as well as IC research (through her academics) for the past eight years. Her research efforts are guided by her dissertation committee, which consists of faculty from both KSU and The Ohio State University.

There are no risks in participating in this study that are greater than those encountered in everyday life, and you would be subject to no penalties or consequences if you decide not to participate. You may also stop answering questions and withdraw from the study at any time without penalty.

If you are ready to take the survey, please click the following link: https://www.surveymonkey.com/s/B526RTD

If you would like to obtain additional information about the study, please contact:

Laura Santurri, MPH, CPH
17576 Auburn Road
Chagrin Falls, Ohio, 44023
lsanturr@kent.edu (e-mail)
330-608-1830 (phone)

OR

Kele Ding, MD, PhD
142 Nixson Hall
Kent State University
Kent, Ohio 44242
kding@kent.edu (e-mail)
330-672-0688 (phone)

Information about KSU's rules for research can be obtained by contacting the IRB at 330-672-2704.

Thank you for your time and consideration. Your participation in this study may lead us to have a better understanding of what it is like to live with IC.

Revised March 15, 2012