International Registry for Primary Hyperoxaluria

Mayo Clinic

Overview

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.

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

OBSERVATIONAL

Conditions

Primary Hyperoxaluria Nephrocalcinosis Kidney Stones

Eligibility

Sex: ALL

Medical Language ↔ Plain English

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 hyperoxaluria * 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

Locations (4)

Mattel Children's Hospital at UCLA

Los Angeles, California, United States

University of California at Davis

Sacramento, California, United States

Children's Memorial Hospital

Chicago, Illinois, United States

Mayo Clinic Rochester

Rochester, Minnesota, United States

Data from ClinicalTrials.gov

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