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

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

This study has been completed.

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
Information provided by:	National Center for Research Resources (NCRR)
ClinicalTrials.gov Identifier:	NCT00004312

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

Genetics Home Reference related topics:

cystinosis

U.S. FDA Resources

Study Type:	Observational
Study Design:	Screening

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

Study ID Numbers:	NCRR-M01RR00827-1196, UCSD-970026, UCSD-950338
First Received:	October 18, 1999
Last Updated:	June 23, 2005
ClinicalTrials.gov Identifier:	NCT00004312
Health Authority:	United States: Federal Government

Keywords provided by National Center for Research Resources (NCRR):

cystinosis

rare disease

renal and genitourinary disorders

Study placed in the following topic categories:

Cystinosis

Metabolism, Inborn Errors

Metabolic Diseases

Nephropathic cystinosis

Genetic Diseases, Inborn

Lysosomal Storage Diseases

Fanconi renotubular syndrome

Rare Diseases

Fanconi Syndrome

Metabolic disorder

ClinicalTrials.gov processed this record on November 30, 2008