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Interstitial cystitis (IC), also called Bladder Pain syndrome (BPS), or chronic pelvic pain syndrome(CPPS) 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, we are collecting genetic material and medical information from families in North America in an attempt to identify genetic factors that may cause IC/BPS/CPPS. We are enrolling families and individuals with IC/BPS/CPPS and their family members (both family members with and without IC like symptoms).


Interstitial Cystitis, Bladder Pain Syndrome, Chronic Pelvic Pain Syndrome

Recruitment Status


Detailed Description

We are trying to identify a genetic cause of interstitial cystitis (IC)/bladder pain syndrome (BPS)/chronic pelvic pain syndrome (CPPS). We will enroll individuals and families with IC/BPS/CPPS to fully describe the symptoms of IC/PBS/CPPS in adults and children. We will attempt to determine if the symptoms of IC/PBS/CPPS match or indicate changes in specific genes or a pathway of connected genes. We will use several genetic technologies including but not limited to; linkage analysis, whole exome sequencing and candidate gene studies to try to identify the cause of IC/BPS/CPPS. We hope this will lead us to better more effective treatments for affected individuals. We are looking for families with IC/BPS/CPPS symptoms to give a DNA sample (from blood/saliva), urine samples, bladder tissue from clinical biopsy and answer several questionnaires. Travel to Boston NOT necessary.

Eligibility Criteria

Inclusion Criteria:

Diagnosis of IC/BPS/CPPS
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
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 Criteria:

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



Min Age

1 Week

Max Age

100 Years

Download Date

April 18, 2023

Principal Investigator

Catherine Brownstein

Primary Contact Information

Elicia A Estrella, MS, LCGC


Pressley Smith, MS, LCGC


For more information on this trial, visit


For more information and to contact the study team:

Identifying Genetic Causes of IC/BPS NCT00389142 Elicia A Estrella, MS, LCGC 617-919-4552 Pressley Smith, MS, LCGC 617-355-4764