Observational Study: Identifying Genetic Causes of IC/BPS

This study is looking for genetic causes of Interstitial Cystitis (IC), also known as Bladder Pain Syndrome (BPS). Researchers believe this condition might be passed down in families. They are collecting genetic material (like blood or saliva) and medical information from people with IC/BPS and their family members, whether or not the family members have symptoms. The goal is to find specific genes or gene pathways that cause IC/BPS, which could lead to better treatments. The study aims to enroll 1000 participants. Success would mean identifying these genetic factors. The current recruitment status is unclear.

Study design
This is an observational study aiming to enroll 1000 participants. It is not specified if there are different phases.
What's involved
You would provide a DNA sample (from blood or saliva), urine samples, and answer several questionnaires. Travel to Boston is not required.
Compensation
Not stated in the trial record.
Follow-up
This is an observational study, with measurements taken through study completion, which is an average of 10 years.

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NCT00389142

Identifying Genetic Causes of IC/BPS

Recruiting
Not specifiedAges 1+Observational
Boston Children's Hospital
~1,000 participants
Updated 2025-12-16 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
observational study
Measured over through study completion, average of 10 years
Interstitial Cystitis
Bladder Pain Syndrome
1 sites across 1 states
Massachusetts1
  • Catherine Brownstein, Ph.D. · PRINCIPAL_INVESTIGATOR · Boston Children's Hosptial

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Eligibility criteria

Inclusion

Diagnosis of IC/BPS
Males and females of any age
Urinary frequency - more than 1X/hour, and/or
Dysuria, and/or
Pelvic, suprapubic, or abdominal pain - for 3 months or longer
Nocturia
Normal urinary stream (by history)
No evidence of active bacterial UTI (no pyuria \& negative urinary culture for last 3 months)
First degree relative of someone with above symptoms

Exclusion

Major structural/anatomical urinary tract abnormalities by ultrasound
Underlying inborn conditions affecting the urinary tract
Surgery/chemotherapy affected pelvic area
GI or GU cancers
Severe Constipation in children only
  • observational studythrough study completion, average of 10 years

    Outcome is candidate or causative genes for causing IC/BPS.