Clinical Trial: Rare Kidney Stone Consortium Patient Registry

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational

Official Title: Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases

Brief 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 Summary: 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.
Sponsor: Mayo Clinic

Current Primary Outcome: Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge [ Time Frame: Yearly ]

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.


Original Primary Outcome:

Current Secondary Outcome: Improved understanding of symptoms and progression of four major diseases of hereditary nephrolithiasis. [ Time Frame: Yearly ]

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.


Original Secondary Outcome:

Information By: Mayo Clinic

Dates:
Date Received: December 27, 2007
Date Started: July 2003
Date Completion: June 2019
Last Updated: July 5, 2016
Last Verified: July 2016