Rare Kidney Stone Consortium Patient Registry
NCT00588562 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 730
Last updated 2025-07-04
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.
Conditions
- Primary Hyperoxaluria
- Dent Disease
- Cystinuria
- APRT Deficiency
Sponsors & Collaborators
-
National Institutes of Health (NIH)
collaborator NIH -
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
collaborator NIH -
Oxalosis and Hyperoxaluria Foundation (OHF)
collaborator OTHER - lead OTHER
Principal Investigators
-
Dawn S. Milliner, M.D. · Primary Hyperoxaluria Registry - Mayo Clinic, Rochester, MN
-
David Goldfarb, MD · Cystinuria Registry, New York University, NY
-
John C Lieske, MD · Dent Disease Registry, Mayo Clinic, Rochester, MN
-
Vidar Edvardsson, MD · APRT Registry, Landspitali University Hospital, Iceland
Eligibility
- Min Age
- 0 Years
- Max Age
- 100 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2003-07-31
- Primary Completion
- 2028-06-30
- Completion
- 2028-06-30
Countries
- United States
- Iceland
Study Locations
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