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

NCT ID: NCT00004312

Last Updated: 2005-06-24

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

400 participants

Study Classification

OBSERVATIONAL

Study Start Date

1999-10-31

Brief Summary

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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.

Detailed Description

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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.

Conditions

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Cystinosis

Eligibility Criteria

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Inclusion Criteria

PROTOCOL ENTRY CRITERIA:

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

0 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

NIH

Sponsor Role collaborator

University of California, San Diego

OTHER

Sponsor Role collaborator

National Center for Research Resources (NCRR)

NIH

Sponsor Role lead

Principal Investigators

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Jerry A. Schneider

Role: STUDY_CHAIR

University of California, San Diego

Locations

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University of California San Diego School of Medicine

La Jolla, California, United States

Site Status

Countries

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United States

Other Identifiers

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UCSD-970026

Identifier Type: -

Identifier Source: secondary_id

UCSD-950338

Identifier Type: -

Identifier Source: secondary_id

NCRR-M01RR00827-1196

Identifier Type: -

Identifier Source: org_study_id