Cure Cystinosis International Registry (CCIR) is an online, patient self-identifying registry developed by medical and scientific experts specifically for the cystinosis community. CCIR's sole purpose is to identify people with cystinosis worldwide in an effort to accelerate novel treatments and a cure for cystinosis. CCIR provides a safe and secure platform for: * sharing anonymous medical information about cystinosis with researchers, clinicians and patients * disseminating information about research opportunities * connecting researchers/investigators and prospective participants \* Interested cystinosis patients may register themselves with CCIR online at http://www.cystinosisregistry.org. \* No personal information is shared outside of CCIR. Individual identities are known only to appropriate CCIR staff. If a participant is matched to a clinical trial, the participant receives a notice from CCIR, after which they can decide whether they wish to contact the study sponsor.
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Age at treatment initiation and the effect on disease outcomes
Timeframe: Lifetime