Cystinosis Registry Research Portal

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Why Join Cure Cystinosis International Registry?

CURE CYSTINOSIS INTERNATIONAL REGISTRY AND MEDICAL RESEARCH

A key goal of the CCIR is to assist clinicians, pharmaceutical companies and researchers in developing new clinical trials and studies for cystinosis. By searching the Registry, study investigators can identify subsets of participants with the characteristics needed for study planning or recruitment. It will also facilitate the gathering of basic clinical information for academic purposes about the characteristics of the disease.

REGISTRY DATA AND CURATION

De-identified data gathered from self-report participant profiles is made available to the CCIR community of registered participants, families, medical care providers and researchers, in the hope that this data will support breakthroughs and expedite clinical trials that could lead to better treatments and care management of cystinosis.

CCIR curates the clinical information submitted by each participant. Curation is an ongoing and continuous process; however, searches of the Registry will include all curated and uncurated data provided by participants. Specific details of curation can be discussed with CCIR, and may be used to refine such searches. Only completed participant profiles are included in searches of the Registry database.

Registration

Please complete the form below to request access to the CCIR research portal. Once approved, you will have access to graphs and charts representing all CCIR registrants. In addition, you will have the ability to download the entire de-identified data set as an Excel spreadsheet file.
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