DATABANK FOR MONITORING PATIENTS WITH CYSTINOSIS

$0M01FY2000RRNIH

University Of California San Diego, La Jolla CA

Investigators

Linked publications & trials

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Abstract

Data will be collected on cystinosis patients in the U.S. and other countries. Defined outcome measures will be analyzed. Goals of the databank are to monitor the long term effectiveness of Cystagon, track medical and adverse events, monitor cystine levels, drug doses, patient follow-up appointments and supplies of Cystagon. Cystine levels on family members and results from prenatal and placenta testing will be stored for analysis.

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