Interstitial Cystitis (IC) Research Study

For bladder pain sufferers, real relief requires research.

Interstitial Cystitis (IC) Research Study

The Harvard Urological Diseases Research Center at Boston Children’s Hospital is conducting a research study on the genetic causes of Interstitial Cystitis (also called Bladder Pain syndrome or Chronic Pelvic Pain syndrome).


Interstitial Cystitis is a common condition with no known cure. It is estimated that every 15 seconds, a person in the USA is diagnosed with interstitial cystitis. Studies have suggested that the disease may be genetic and passed down (or inherited) from one generation to the next. Our study involves searching for the gene(s) that may be responsible for interstitial cystitis in order to develop better ways to diagnose and treat this condition.


To be eligible for participation, a person must meet the following requirements:

  • Have interstitial cystitis, painful bladder syndrome, or chronic pelvic pain syndrome
  • Be willing to provide a saliva and/or blood and urine sample
  • Agree to complete brief questionnaires
  • Live in the USA or Canada


Enrollment is voluntary, and there is no need to travel. Informed consent and questionnaires will be obtained via telephone and mail, and samples can be collected at the participant’s home. There is also no cost to participate in the study.

If you, or someone you know, may be eligible for this study and would like more information, please complete the form below or contact:

Elicia Estrella, MS, CGC
Licensed Genetic Counselor
Boston Children’s Hospital