Hemorrhagic/Radiation Cystitis Patient Registry

We are happy to highlight the hemorrhagic/radiation cystitis patient registry linked to below.


The potential uses of this registry include improving the scientific understanding of radiation cystitis, discovering trends and common needs of registry participants, describing the aggregate personal characteristics of patients within the registry, documenting registry patient medical histories, and contacting registry participants to inform them of new studies.


This registry has been created and developed within the published guidance of the National Institute of Health Rare Diseases Registry Program (RaDaR). The goal of the registry is to create a resource to help doctors and researchers better recognize severe complications that arise long after pelvic radiation treatments.

If you are interested, the form takes about 5 minutes is located via the link below. Note: the registry is not managed by the Radiation Cystitis Foundation. Please review the registry instructions and disclosures to ensure it fits with your situation.