An observational study in Interstitial Cystitis and Bladder Pain Syndrome, sponsored by Boston Children's Hospital. Recruiting at 1 site in United States. Open to participants aged 1 Year and older. Per ClinicalTrials.gov, last updated 2025-12-16.
Sponsored by Boston Children's Hospital · Observational
Interstitial cystitis (IC), also called Bladder Pain syndrome (BPS) is a common condition with no known cause or cure. Twin studies and family accounts have suggested that the condition may be genetic or passed down (inherited) from one generation to another.
In this study, the investigators are collecting genetic material via blood or saliva and medical information from families in North America in an attempt to identify genetic factors that may cause IC/BPS. The investigators are enrolling inviduals with IC/BPS and their family members (family members with and without IC like symptoms). Travel to Boston not required.
The investigators are trying to identify a genetic cause of interstitial cystitis (IC)/bladder pain syndrome (BPS). The investigators are looking to enroll individuals with a clinical diagnosis of IC/BPS and their family member. The investigators are attempting to determine if there is a connection between symptoms of IC/PBS and changes in specific genes or a pathway of connected genes. The investigators will use several genetic technologies including but not limited to; linkage analysis, genome sequencing, RNAseq and candidate gene studies to try to identify the cause of IC/BPS. Once the investigators identify the cause of IC/BPS they will be able to identify and design more effective treatments for affected individuals. The investigators are looking for families with IC/BPS symptoms to give a DNA sample (from blood/saliva), urine samples, and answer several questionnaires. Travel to Boston NOT necessary.
236 studies on the registry are indexed under Cystitis, Interstitial; 35 are open to participants now.
This study's planned enrollment of 1,000 is above the median of 100 across 63 observational studies indexed under Cystitis, Interstitial.
Browse Cystitis, Interstitial studies →Boston Children's Hospital is the lead sponsor of 608 studies on the registry; 147 are open to participants now.
Of its 32 completed or terminated interventional studies of FDA-regulated products, 19 (59%) have results posted.
Counted across the registry records on this site, refreshed daily.
The investigators are collecting patients throughout North America (including the United States and Canada)
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Exclusion Criteria:
All participants will undergo genome sequencing and urinalysis studies.
observational study
Outcome is candidate or causative genes for causing IC/BPS.
Time frame: through study completion, average of 10 years
Plan to share: Yes — De-identified data from individual participants may be shared with other researchers. Other researchers will be approved by the internal review board at BCH.
Supporting information: Study protocol, Statistical analysis plan, Informed consent form
Time frame: We will store data and samples indefinitely and may share samples/data with future collaborators.
Access criteria: Data may be shared throughout the duration of the study. Collaborators will share de-identified data provided by study staff.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
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