I am happy to highlight one relatively new radiation cystitis patient registry (link 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 this link (https://radiationcystitis.com/) Always review the registry instructions and disclosures to ensure it fits with your situation. Note: we do not manage this patient registry.
Do you know of any other patient registry or organizations that aggregate patient contact information to support radiation cystitis research? Let us know - we would love to feature them here! There is a severe lack of radiation cystitis research and we would love to highlight or support further efforts.
Note: As an organization, we do not recommend any specific registry - we would like to highlight any helpful radiation cystitis resources we learn of.