Cure Cystinosis International Registry

Status unconfirmed

Conditions studied: Cystinosis, Nephropathic Cystinosis, Renal Fanconi Syndrome

In brief

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.

Key facts

Study ID

NCT01327807

Run by

Cystinosis Research Foundation

People needed

750

Starts

2010-08-01

Expected to finish

2022-12-01

Last updated by the study team

2014-03-12

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Diagnosis of cystinosis

Where it is running

• University of California, San Diego — San Diego, California, United States (enrolling)

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.