Primary Hyperoxaluria Clinical Trial
— RKSCOfficial title:
Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases
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.
Status | Recruiting |
Enrollment | 730 |
Est. completion date | June 2025 |
Est. primary completion date | June 2025 |
Accepts healthy volunteers | No |
Gender | All |
Age group | 0 Years to 100 Years |
Eligibility | 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,Dent Disease, Cystinuria or APRT Deficiency. Exclusion Criteria: - Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency. |
Country | Name | City | State |
---|---|---|---|
Iceland | APRT Registry - Landspitali Universtiy Hospital | Reykjavik | |
United States | Cystinuria Registry - New York University | New York | New York |
United States | Dent Disease Registry -Mayo Clinic | Rochester | Minnesota |
United States | Primary Hyperoxaluria Registry - Mayo Clinic | Rochester | Minnesota |
Lead Sponsor | Collaborator |
---|---|
Mayo Clinic | National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH), Oxalosis and Hyperoxaluria Foundation (OHF) |
United States, Iceland,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge | The patient Registries will expand knowledge of the clinical expression of these disease by systematically accumulating and analyzing information regarding a larger number of patients than have been studied to date. | Yearly | |
Secondary | Improved understanding of symptoms and progression of four major diseases of hereditary nephrolithiasis. | The goal of the patient Registries is to collect data about these rare diseases, provide a better understanding of these four conditions and help to develop new treatments. | Yearly |
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