Genetic Studies in Interstitial Cystitis and Bladder Pain Syndrome (IC/BPS)

What this Trial Is About

Researchers are investigating interstitial cystitis (IC), also known as bladder pain syndrome (BPS), a common condition with unknown cause or cure that may have genetic links passed down through families. This observational study aims to identify genetic factors contributing to IC/BPS by collecting genetic material and medical information from affected individuals and their family members in North America. The study is sponsored by Boston Children's Hospital and seeks to better understand the condition's origins to help develop improved treatments in the future. Participants, including those diagnosed with IC/BPS and their family members with or without symptoms, will provide DNA samples through blood or saliva and urine samples. The study uses advanced genetic technologies such as genome sequencing, RNA sequencing, linkage analysis, and candidate gene studies to explore genetic changes associated with IC/BPS. All participants will be part of one cohort undergoing these genetic and urinalysis assessments, with no need to travel to Boston. During the study, participants will complete questionnaires about their symptoms and medical history. Researchers will observe participants over an average of 10 years to gather data on genetic factors related to IC/BPS. This long-term observational follow-up includes urine tests and detailed genetic analyses to understand the condition better. Participants contribute to advancing knowledge without affecting their usual care, and there is no active treatment involved in the study.

Identifying Genetic Causes of IC/BPS