International Registry for Primary Hyperoxaluria

Withdrawn before enrolling

Conditions studied: Primary Hyperoxaluria, Nephrocalcinosis, Kidney Stones

In brief

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.

Key facts

Study ID

NCT00875823

Run by

Mayo Clinic

People needed

0

Starts

2003-09-01

Expected to finish

2009-07-01

Last updated by the study team

2015-04-07

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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

You may not qualify if…

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

Where it is running

• 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

Full record on ClinicalTrials.gov

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