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

This study has been completed.
University of California, San Diego
Information provided by:
National Center for Research Resources (NCRR) Identifier:
First received: October 18, 1999
Last updated: June 23, 2005
Last verified: December 2003

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.


Study Type: Observational
Study Design: Primary Purpose: Screening

Resource links provided by NLM:

Further study details as provided by National Center for Research Resources (NCRR):

Estimated Enrollment: 400
Study Start Date: October 1999
Detailed Description:


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.


Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No


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

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Please refer to this study by its identifier: NCT00004312

United States, California
University of California San Diego School of Medicine
La Jolla, California, United States, 92093-0652
Sponsors and Collaborators
University of California, San Diego
Study Chair: Jerry A. Schneider University of California, San Diego
  More Information

No publications provided Identifier: NCT00004312     History of Changes
Other Study ID Numbers: NCRR-M01RR00827-1196, UCSD-970026, UCSD-950338
Study First Received: October 18, 1999
Last Updated: June 23, 2005
Health Authority: United States: Federal Government

Keywords provided by National Center for Research Resources (NCRR):
rare disease
renal and genitourinary disorders

Additional relevant MeSH terms:
Genetic Diseases, Inborn
Lysosomal Storage Diseases
Metabolic Diseases
Metabolism, Inborn Errors processed this record on August 31, 2015