Rare Kidney Stone Consortium Patient Registry (RKSC)
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.
|Study Design:||Observational Model: Cohort|
|Official Title:||Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases|
- Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge [ Time Frame: Yearly ] [ Designated as safety issue: No ]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.
- Improved understanding of symptoms and progression of four major diseases of hereditary nephrolithiasis. [ Time Frame: Yearly ] [ Designated as safety issue: No ]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.
|Study Start Date:||July 2003|
|Estimated Study Completion Date:||June 2014|
|Estimated Primary Completion Date:||June 2014 (Final data collection date for primary outcome measure)|
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.
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.
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.
|Contact: Julie B. Olson, RNemail@example.com|
|Contact: Mayo Clinic Hyperoxaluria Centerfirstname.lastname@example.org|
|United States, Minnesota|
|Primary Hyperoxaluria Registry - Mayo Clinic||Recruiting|
|Rochester, Minnesota, United States, 55905|
|Contact: Barb M Seide, Study Coord 800-270-4637 email@example.com|
|Contact: Julie B Olson, RN Coord 800-270-4637 firstname.lastname@example.org|
|Principal Investigator: Dawn S. Milliner, MD|
|Dent Disease Registry -Mayo Clinic||Recruiting|
|Rochester, Minnesota, United States, 55905|
|Contact: Barb M Seide, Study Coord 800-270-4637 email@example.com|
|Contact: Julie B Olson, RN Coord 800-270-4637 firstname.lastname@example.org|
|Principal Investigator: John C Lieske, MD|
|United States, New York|
|Cystinuria Registry - New York University||Recruiting|
|New York, New York, United States, 10010|
|Contact: David Goldfarb, MD 212-263-0744 David.Goldfarb@va.gov|
|Contact: Frank Modersitzki, MPH 216-686-7500 ext 6379 Frank.Modersitzki@nyumc.org|
|Principal Investigator: David Goldfarb, MD|
|APRT Registry - Landspitali Universtiy Hospital||Recruiting|
|Contact: Vidar Edvardsson, MD 354-824-5227 email@example.com|
|Contact: Runolfur Palsson, MD 354-824-5227 firstname.lastname@example.org|
|Principal Investigator: Vidar Edvardsson, MD|
|Principal Investigator:||Dawn S. Milliner, M.D.||Primary Hyperoxaluria Registry - Mayo Clinic, Rochester, MN|
|Study Director:||David Goldfarb, MD||Cystinuria Registry, New York University, NY|
|Study Director:||John C Lieske, MD||Dent Disease Registry, Mayo Clinic, Rochester, MN|
|Study Director:||Vidar Edvardsson, MD||APRT Registry, Landspitali University Hospital, Iceland|