NCT00588562

Rare Kidney Stone Consortium Patient Registry

Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 730 (estimated)
• Sponsor: Mayo Clinic · Academic / Other
• Sex: All
• Age: 0 Years – 100 Years
• Healthy volunteers: Not accepted

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.

Detailed 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.

Conditions

• Primary Hyperoxaluria
• Dent Disease
• Cystinuria
• APRT Deficiency

Timeline

• Start date: 2003-07-01
• Primary completion: 2028-06-01
• Completion: 2028-06-01
• First posted: 2008-01-08
• Last updated: 2025-07-04

Locations

4 sites across 2 countries: United States, Iceland