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

Primary Purpose

Cystinosis

Status

Completed

Phase

Locations

United States

Study Type

Observational

Intervention

About this trial

This is an observational trial for Cystinosis focused on measuring cystinosis, rare disease, renal and genitourinary disorders

Eligibility Criteria

0 Years - undefined (Child, Adult, Older Adult)All SexesDoes not accept healthy volunteers

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

Sites / Locations

University of California San Diego School of Medicine

Outcomes

Primary Outcome Measures

Secondary Outcome Measures

Full Information

NCT ID

NCT00004312

First Posted

October 18, 1999

Last Updated

June 23, 2005

Sponsor

National Center for Research Resources (NCRR)

Collaborators

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), University of California, San Diego

1. Study Identification

Unique Protocol Identification Number

NCT00004312

Brief Title

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

Study Type

Observational

2. Study Status

Record Verification Date

December 2003

Overall Recruitment Status

Completed

Study Start Date

October 1999 (undefined)

Primary Completion Date

undefined (undefined)

Study Completion Date

undefined (undefined)

3. Sponsor/Collaborators

Name of the Sponsor

National Center for Research Resources (NCRR)

Collaborators

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), University of California, San Diego

4. Oversight

5. Study Description

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.

6. Conditions and Keywords

Primary Disease or Condition Being Studied in the Trial, or the Focus of the Study

Cystinosis

Keywords

cystinosis, rare disease, renal and genitourinary disorders

7. Study Design

Enrollment

400 (false)

10. Eligibility

Sex

All

Minimum Age & Unit of Time

0 Years

Accepts Healthy Volunteers

Eligibility Criteria

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

Overall Study Officials:

First Name & Middle Initial & Last Name & Degree

Jerry A. Schneider

Organizational Affiliation

University of California, San Diego

Official's Role

Study Chair

Facility Information:

Facility Name

University of California San Diego School of Medicine

City

La Jolla

State/Province

California

ZIP/Postal Code

92093-0652

Country

United States

12. IPD Sharing Statement

Learn more about this trial

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

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