Login to Access Video or Poster Abstract: MP31-04
Sources of Funding: We would like to thank the Taubman family for their generous support of interstitial cystitis research including this project.

Introduction

Interstitial cystitis/bladder pain syndrome (IC/BPS) has significant unmet medical needs including the lack of an objective laboratory test, such as a urine based biomarker. National collection of adequate patient samples for IC/BPS including normal controls can be challenging. We developed a novel research model that can engage multiple stakeholders and allow fast and broad participation for biomarker development.

Methods

In January 2016, a national crowdsourced research project engaging the entire IC/BPS community was conducted by Beaumont Health researchers in collaboration with the Interstitial Cystitis Association (ICA). This study had Institutional Review Board approval. Announcement of this study through social media was disseminated by the ICA. YouTube videos describing the scope of the project and participant requirements were posted (https://youtu.be/3BlnZdCq5vw and https://youtu.be/GL9T7ISyImk). Questionnaires were completed online through HIPAA compliant Survey Monkey. Special urine containers with preservatives developed to maintain protein and nucleic acid integrity in urine at ambient temperature were sent to consented participants with prepaid return shipping.

Results

Public participation was overwhelming and enrollment was closed within two weeks. Overall, men and women of all age groups submitted samples from 46 US states (Figure 1). Total samples received is illustrated in Figure 2. Multiplex analysis discovered three proteins that were highly statistically significant different between IC with ulcer vs IC without ulcer and normal control.

Conclusions

Crowdsourced research toward biomarker development was shown to be feasible and successful in advancing IC/BPS research. Patients with ulcerative IC/BPS have a different profile of urine proteins than normal and non-ulcerative IC patients. A validated Interstitial Cystitis Ulcer Score (ICUS) has been developed from this crowdsourced research project involving multiple stakeholders in interstitial cystitis.

Funding

We would like to thank the Taubman family for their generous support of interstitial cystitis research including this project.