Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases

Status: Recruiting
Location: See all (4) locations...
Study Type: Observational
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
Participation Requirements
Sex: All
Maximum Age: 100
Healthy Volunteers: f
View:

• 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.

Locations
United States
Minnesota
Dent Disease Registry -Mayo Clinic
RECRUITING
Rochester
Primary Hyperoxaluria Registry - Mayo Clinic
RECRUITING
Rochester
New York
Cystinuria Registry - New York University
RECRUITING
New York
Other Locations
Iceland
APRT Registry - Landspitali Universtiy Hospital
RECRUITING
Reykjavik
Contact Information
Primary
Julie B. Olson, RN
rarekidneystones@mayo.edu
507-538-5995
Backup
Mayo Clinic Hyperoxaluria Center
hyperoxaluriacenter@mayo.edu
1-800-270-4637
Time Frame
Start Date: 2003-07
Estimated Completion Date: 2028-06
Participants
Target number of participants: 730
Treatments
Primary Hyperoxaluria patients
Registry will include data on patients with confirmed diagnosis of Primary Hyperoxaluria.
Dent Disease Patients
Registry will include data on patients with confirmed diagnosis of Dent Disease.
Cystinuria Patients
Registry will include data on patients with confirmed diagnosis of Cystinuria.
APRT deficiency Patients
Registry will include data on patients with confirmed diagnosis of APRT deficiency.
Sponsors
Collaborators: National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Oxalosis and Hyperoxaluria Foundation (OHF), National Institutes of Health (NIH)
Leads: Mayo Clinic

This content was sourced from clinicaltrials.gov