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)
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    
United States, California
University of California San Diego School of Medicine    
      La Jolla, California, United States, 92093-0652
National Center for Research Resources (NCRR)
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

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
Nephropathic cystinosis
Lysosomal Storage Diseases
Fanconi renotubular syndrome
Rare Diseases
Fanconi Syndrome
Metabolic disorder

Additional relevant MeSH terms:
Metabolic Diseases
Genetic Diseases, Inborn

Source: National Library of Medicine (NLM) July 03, 2008

  
 
Browse
  
 
Get Health benefits Now