International Registry for Primary Hyperoxaluria

Brief Title

International Registry for Primary Hyperoxaluria

Official Title

International Registry for Hereditary Calcium 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. This medical information will be
      entered into a registry to help the investigators compare similarities and differences in
      patients and their symptoms. The more patients that the investigators are able to enter into
      the registry, the more the investigators will be able to understand primary hyperoxaluria and
      learn better ways of treating patients with this disease. It is the investigators hope that
      by entering as many patients with PH as possible, the information that the investigators
      collect may help physicians diagnose patients sooner and determine what treatments may work
      best on patients with similar medical or genetic backgrounds.

Detailed Description

      This study involves the collection of medical information to create a computer database
      (registry) for patients with PH. The information will be entered into the registry by your
      physician, healthcare provider or a staff member of the Mayo Clinic Hyperoxaluria Center. 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,kidney stone
      history, lab values, kidney function, and your health over time. Information for a patient
      can only be viewed by the appropriate physician and staff. Once the information is entered
      into the registry, you will only be identified by a code number.

Study Type



Primary Hyperoxaluria

Study Arms / Comparison Groups

 PH Patients
Description:  Patients with:
Primary Hyperoxaluria Type I Primary Hyperoxaluria Type II Primary Hyperoxaluria NonI-NonII


* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information

Estimated Enrollment


Start Date

September 2003

Completion Date

July 2009

Primary Completion Date

July 2009

Eligibility Criteria

        Inclusion Criteria:

          -  Liver biopsy or genetic analysis that confirms a diagnosis of hyperoxaluria

          -  In the absence of a liver biopsy:

          -  Urine oxalate excretion of >0.8 mmol/1.73 m² /day without other causes such as enteric

          -  Family history of PH in a sibling will be supportive

          -  A history or current finding of kidney stones or nephrocalcinosis will be supportive

          -  An increase in urine glycolate may suggest PHI or an increase in urine L-glycerate may
             suggest PHII, though not required for diagnosis.

          -  Patients presenting in renal failure with an elevate pre-dialysis plasma oxalate of 60
             umol/l and a kidney biopsy that confirms extensive oxalate deposition, or evidence of
             systemic oxalosis

        Exclusion Criteria:

          -  Patients without any of the above or a confirmed diagnosis of PH




N/A - N/A

Accepts Healthy Volunteers



John C Lieske, M.D., , 

Location Countries

United States

Location Countries

United States

Administrative Informations



Organization ID


Study Sponsor

Mayo Clinic


 National Institutes of Health (NIH)

Study Sponsor

John C Lieske, M.D., Principal Investigator, Mayo Clinic Department of Nephrology and Hypertension

Verification Date

April 2015