Potential Diagnostic Method and Biomarker for Interstitial Cystitis Identified in Research Study Leveraging Social Media Recruitment

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A potential Interstitial Cystitis diagnostic differentiated research participants with bladder permeability defects using a new biomarker score. The Underactive Bladder Foundation is pleased to share this research.

Our goal was to develop a novel urine-based test that identifies IC or bladder pain syndrome patients who have a bladder permeability defect. Tests like this are needed to in advancing personalized medicine and tailor the right treatment for the right patient

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 successful medical research.

Researchers in the Urology department at Beaumont Hospital, Royal Oak, Michigan collaborated with the Interstitial Cystitis Association to use social media, including Facebook and Twitter, to recruit research volunteers for a study exploring the development of a new urine biomarker for the diagnosis of interstitial cystitis (IC). 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.

The use of social media expedited research study recruitment. Within two weeks, men and women from 46 states participated in the research study. Participants watched a YouTube video and completed an online survey. Qualified participants were sent a prepaid return shipping container to provide a urine sample.

Analysis of the samples using a machine-learning computer program led to the discovery of a new biomarker score that differentiated research participants with IC with bladder permeability defect from IC patient’s without bladder permeability defect or people without any bladder problems. The new Bladder Permeability Defect Risk Score (BP-RS) classified IC with ulcers, or with a bladder permeability defect etiology, with 89% validity.

The study title is "Development of an Interstitial Cystitis Risk Score for Bladder Permeability" and the results of this study are now published in PLOS ONE.

Laura Lamb, Ph.D., urology research scientist at Beaumont said, “Our goal was to develop a novel urine-based test that identifies IC or bladder pain syndrome patients who have a bladder permeability defect. Tests like this are needed to advance personalized medicine and to tailor the right treatment for the right patient.”

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 20 times a day or more. Participants were recruited through a collaboration with the Interstitial Cystitis Association, which has an active and strong 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.”

Michael Chancellor, M.D., director of translational urology research 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.”

Dr. Chancellor further said, “The outcome of the study is a significant advance toward personalized medicine - the development of the first validated urine biomarker test for interstitial cystitis/bladder pain syndrome.”

About PLOS ONE     
The world’s first multidisciplinary Open Access journal, PLOS ONE accepts scientifically rigorous research, regardless of novelty. PLOS ONE’s broad scope provides a platform to publish primary research including interdisciplinary and replication studies as well as negative results. The journal’s publication criteria are based on high ethical standards and the rigor of the methodology and conclusions reported.

About the Underactive Bladder Foundation
The Underactive Bladder (UAB) Foundation is a patient-focused charity based in Pittsburgh, PA. The UAB foundation seeks to facilitate research by raising awareness of unmet medical needs in urology.

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

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Dr. Laura Lamb

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