This website, designed for researchers, clinicians, policymakers and industry professionals, is a key component of the interactive nature of the Cure Cystinosis International Registry (CCIR) vision.
CCIR provides clinical resources for the research community. Registered providers have access to the following website features:
Explore Responses- View de-identified aggregate clinical data from the entire patient registry database to learn about disease burden.
(Example: See how many registrants answered ‘Yes’ to ‘Has the affected person ever had a kidney transplant?’)
Filter Responses- Perform limited searches of the registry in order to identify target populations for trial/study planning and recruitment.
(Example: See how many males answered ‘Yes’ to ‘Has the affected person ever had a kidney transplant?’)
Query Data- Request a custom registry report from the Curator that includes results from more refined or complex searches, and also information such as participant location or profile curation status.
(Example: See a comparative analysis between different countries of males who have ever had a kidney transplant)
Recruit for Clinical Trials- Post an IRB approved clinical trial recruitment material on the CCIR website or request for the material to be emailed to targeted population.