We updated the design of this site on December 18, 2017. Learn more.
ClinicalTrials.gov Menu

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

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
ClinicalTrials.gov Identifier: NCT00004312
Recruitment Status : Completed
First Posted : October 19, 1999
Last Update Posted : June 24, 2005
Information provided by:

Study Description
Brief Summary:

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 or disease

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.

Study Design

Study Type : Observational
Estimated Enrollment : 400 participants
Primary Purpose: Screening
Study Start Date : October 1999

Groups and Cohorts

Outcome Measures

Eligibility Criteria

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No


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

Contacts and Locations

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00004312

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
Study Chair: Jerry A. Schneider University of California, San Diego
More Information

ClinicalTrials.gov Identifier: NCT00004312     History of Changes
Other Study ID Numbers: NCRR-M01RR00827-1196
First Posted: October 19, 1999    Key Record Dates
Last Update Posted: June 24, 2005
Last Verified: December 2003

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

Additional relevant MeSH terms:
Lysosomal Storage Diseases
Metabolism, Inborn Errors
Genetic Diseases, Inborn
Metabolic Diseases