Establishment of a Database for Long-Term Monitoring of Patients With Nephropathic Cystinosis

National Center for Research Resources (NCRR)

Status: Completed

Conditions: Cystinosis

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT00004312

UCSD-950338

UCSD-970026

NCRR-M01RR00827-1196

Details and patient eligibility

About

OBJECTIVES: I. Establish a computerized databank to monitor the progress of patients with cystinosis treated with cysteamine.

II. Track and monitor all patients including renal transplant, dialysis and post renal transplants.

Full description

PROTOCOL OUTLINE:

Data are collected from patients and physicians. Information includes disease, treatment, family history, demographic, and physical exam data. The dates of kidney transplantation and/or dialysis initiation are also recorded.

Sex: All

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

PROTOCOL ENTRY CRITERIA:

Nephropathic cystinosis diagnosis by white-cell cystine measurement, including infantile and late-onset forms