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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT00004312

Enrollment

400

Registered

1999-10-19

Start date

1999-10-31

Completion date

Unknown

Last updated

2005-06-24

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Cystinosis

Keywords

cystinosis, rare disease, renal and genitourinary disorders

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.

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.

Interventions

None listed

Eligibility

Sex/Gender

ALL

Age

0 Years to No maximum

Healthy volunteers

Inclusion criteria

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

Countries

United States

Outcome results