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

Cystinosis Clinical Trial

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT00004312
• Other study ID #: NCRR-M01RR00827-1196
• Secondary ID: UCSD-970026UCSD-
• Status: Completed
• Phase: N/A
• First received: October 18, 1999
• Last updated: June 23, 2005
• Start date: October 1999

Study information

• Verified date: December 2003
• Source: National Center for Research Resources (NCRR)
• Contact: n/a
• Is FDA regulated: No
• Health authority: United States: Federal Government
• Study type: Observational

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 400
• Accepts healthy volunteers: No
• Gender: Both
• Age group: N/A and older

Eligibility

PROTOCOL ENTRY CRITERIA:

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

Study Design

Primary Purpose: Screening

Related Conditions & MeSH terms

• Cystinosis

Locations

Country	Name	City	State
United States	University of California San Diego School of Medicine	La Jolla	California

Sponsors (3)

Lead Sponsor	Collaborator
National Center for Research Resources (NCRR)	Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), University of California, San Diego

Country where clinical trial is conducted

United States,