Full Text View  
  Tabular View  
  Contacts and Locations  
  No Study Results Posted  
  Related Studies  
Assisting Outside Centers With the Entry of New Patients Into the Existing Registry
This study is currently recruiting participants.
Verified by Mayo Clinic, January 2008
Sponsors and Collaborators: Mayo Clinic
National Institutes of Health (NIH)
Oxalosis and Hyperoxaluria Foundation (OHF)
Information provided by: Mayo Clinic
ClinicalTrials.gov Identifier: NCT00588562
  Purpose

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). 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 and learn better ways of caring for patients with this disease.


Condition Intervention
Primary Hyperoxaluria
Other: Registry

Genetics Home Reference related topics: primary hyperoxaluria
Drug Information available for: Calcium gluconate
U.S. FDA Resources
Study Type: Observational
Official Title: International Registry for Hereditary Calcium Stone Diseases - An Outside Assisted Center Protocol for the Addition of New Patients Into the Existing Registry (IRB#1605-03).

Further study details as provided by Mayo Clinic:

Estimated Enrollment: 400
Study Start Date: July 2003
Estimated Study Completion Date: July 2010
Estimated Primary Completion Date: July 2010 (Final data collection date for primary outcome measure)
Intervention Details:
    Other: Registry
    A collection of deidentified patient data from individuals with confirmed Primary Hyperoxaluria
Detailed Description:

This study involves the collection of medical information to create a computer database or registry for patients with PH. 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, lab 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.

  Eligibility

Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Study Population

Individuals with Primary Hyperoxaluria

Criteria

Inclusion Criteria:

  • Individuals must have a definitive diagnosis Primary Hyperoxaluria
  • Individuals have a family history of a sibling with Primary Hyperoxaluria

Exclusion Criteria:

  • Individuals who do not have Primary Hyperoxaluria
  Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00588562

Contacts
Contact: Susan R. Rogers 507-266-9391 rogers.susan@mayo.edu
Contact: Mayo Clinic Hyperoxaluria Center 1-800-270-4637 hyperoxaluriacenter@mayo.edu

Locations
United States, Minnesota
Mayo Clinic Recruiting
Rochester, Minnesota, United States, 55905
Principal Investigator: John Lieske, MD            
Sponsors and Collaborators
Mayo Clinic
Oxalosis and Hyperoxaluria Foundation (OHF)
  More Information

International Registry webpage  This link exits the ClinicalTrials.gov site
Mayo Clinic Hyperoxaluria Center  This link exits the ClinicalTrials.gov site
Mayo Clinic Clinical Trials  This link exits the ClinicalTrials.gov site

Responsible Party: Mayo Clinic ( Dr. John Lieske )
Study ID Numbers: 07-003476, DK73354-03
Study First Received: December 27, 2007
Last Updated: January 30, 2008
ClinicalTrials.gov Identifier: NCT00588562  
Health Authority: United States: Federal Government;   United States: Institutional Review Board

Keywords provided by Mayo Clinic:
PH
PH1
PH2
PH3
PHI
PHII
PHIII
Primary Hyperoxaluria
Primary Oxalosis
Hyperoxaluria

Study placed in the following topic categories:
Calcium, Dietary
Metabolism, Inborn Errors
Metabolic Diseases
Hyperoxaluria, Primary
Genetic Diseases, Inborn
Urologic Diseases
Hyperoxaluria
Kidney Diseases
Metabolic disorder
Calculi
Oxalosis

Additional relevant MeSH terms:
Carbohydrate Metabolism, Inborn Errors

ClinicalTrials.gov processed this record on January 16, 2009