Rare Kidney Stone Consortium Patient Registry

Last updated: August 23, 2024
Sponsor: Mayo Clinic
Overall Status: Active - Recruiting

Phase

N/A

Condition

Kidney Failure (Pediatric)

Kidney Stones

Treatment

N/A

Clinical Study ID

NCT00588562
11-001702
1U54DK083908-01
  • Ages < 100
  • All Genders

Study Summary

The purpose of this study is to collect medical information from a large number of patients in many areas of the world with primary hyperoxaluria (PH), Dent disease, Cystinuria and APRT deficiency. This information will create a registry that will help us to compare similarities and differences in patients and their symptoms. The more patients we are able to enter into the registry, the more we will be able to understand the Primary Hyperoxalurias,Dent disease, cystinuria and APRT and learn better ways of caring for patients with these diseases.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Individuals must have a definitive diagnosis of Primary Hyperoxaluria, Dent Disease,Cystinuria or APRT Deficiency.

  • Individuals have a family history of a sibling with Primary Hyperoxaluria,DentDisease, Cystinuria or APRT Deficiency.

Exclusion

Exclusion Criteria:

  • Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRTDeficiency.

Study Design

Total Participants: 730
Study Start date:
July 01, 2003
Estimated Completion Date:
June 30, 2025

Study Description

This study involves the collection of medical information to create a computer database or registry for patients with PH, Dent disease, cystinuria and APRT deficiency. The information will be entered into the registry by your physician or health care provider. The computer web site for the registry is secure and protected by a required password. Some information which will be entered may include your age at first symptoms of PH,Dent disease, cystinuria or APRT, laboratory values, kidney function and the progress of your health over time. Information for an individual patient can only be viewed by the appropriate physician or staff. Once the information is entered into the registry, you will only be identified by a code number.

Connect with a study center

  • APRT Registry - Landspitali Universtiy Hospital

    Reykjavik,
    Iceland

    Active - Recruiting

  • Dent Disease Registry -Mayo Clinic

    Rochester, Minnesota 55905
    United States

    Active - Recruiting

  • Primary Hyperoxaluria Registry - Mayo Clinic

    Rochester, Minnesota 55905
    United States

    Active - Recruiting

  • Cystinuria Registry - New York University

    New York, New York 10010
    United States

    Active - Recruiting

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