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

This study has been completed.
Sponsor:
Collaborators:
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
University of California, San Diego
Information provided by:
National Center for Research Resources (NCRR)
ClinicalTrials.gov Identifier:
NCT00004312
First received: October 18, 1999
Last updated: June 23, 2005
Last verified: December 2003
History of Changes
  Purpose

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.


Condition
Cystinosis

Study Type: Observational
Study Design: Primary Purpose: Screening

Resource links provided by NLM:

U.S. FDA Resources

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

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

  Eligibility

Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Criteria

PROTOCOL ENTRY CRITERIA:

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

  Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00004312

Locations
United States, California
University of California San Diego School of Medicine
La Jolla, California, United States, 92093-0652
Sponsors and Collaborators
National Center for Research Resources (NCRR)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
University of California, San Diego
Investigators
Study Chair: Jerry A. Schneider University of California, San Diego
  More Information

No publications provided

ClinicalTrials.gov 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):
cystinosis
rare disease
renal and genitourinary disorders

Additional relevant MeSH terms:
Cystinosis
Fanconi Syndrome
Lysosomal Storage Diseases
Metabolism, Inborn Errors
Genetic Diseases, Inborn
 Metabolic Diseases
Kidney Diseases
Urologic Diseases
Renal Tubular Transport, Inborn Errors

ClinicalTrials.gov processed this record on June 18, 2013