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

Sponsor
National Center for Research Resources (NCRR) (NIH)
Overall Status
Completed
CT.gov ID
NCT00004312
Collaborator
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (NIH), University of California, San Diego (Other)
400
Enrollment
1
Location

Study Details

Study Description

Brief Summary

OBJECTIVES: I. Establish a computerized databank to monitor the progress of patients with cystinosis treated with cysteamine.

  1. Track and monitor all patients including renal transplant, dialysis and post renal transplants.
Condition or Disease Intervention/Treatment Phase

    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.

    Study Design

    Study Type:
    Observational
    Study Start Date :
    Oct 1, 1999

    Outcome Measures

    Primary Outcome Measures

      Eligibility Criteria

      Criteria

      Ages Eligible for Study:
      0 Years and Older
      Sexes Eligible for Study:
      All
      Accepts Healthy Volunteers:
      No
      PROTOCOL ENTRY CRITERIA:

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

      Contacts and Locations

      Locations

      Site City State Country Postal Code
      1 University of California San Diego School of Medicine La Jolla California United States 92093-0652

      Sponsors and Collaborators

      • National Center for Research Resources (NCRR)
      • Eunice Kennedy Shriver 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

      Study Documents (Full-Text)

      None provided.

      More Information

      Publications

      None provided.
      Responsible Party:
      , ,
      ClinicalTrials.gov Identifier:
      NCT00004312
      Other Study ID Numbers:
      • NCRR-M01RR00827-1196
      • UCSD-970026
      • UCSD-950338
      First Posted:
      Oct 19, 1999
      Last Update Posted:
      Jun 24, 2005
      Last Verified:
      Dec 1, 2003
      Keywords provided by , ,
      cystinosis
      rare disease
      renal and genitourinary disorders
      Additional relevant MeSH terms:
      Cystinosis

      Study Results

      No Results Posted as of Jun 24, 2005