International Registry for Primary Hyperoxaluria
& Dent's Disease

Update: October 2007
The primary hyperoxalurias are rare hereditary diseases of oxalate metabolism that cause kidney stone disease and can cause kidney failure. Dent's disease is another inherited disorder that leads to stone formation and kidney damage. An accurate understanding of the course of these diseases can provide valuable information for patients, for physicians who care for them, and for research scientists who seek knowledge that will lead to more effective treatments. Yet effects of these diseases can differ from patient to patient, even among brothers and sisters in the same family. Because of the rarity of patients, even physicians who specialize in kidney stone disease are likely to see only a few primary hyperoxaluria or Dent's disease patients over the course of a practicing lifetime.

In an effort to address this need for more comprehensive information, an International Registry was established at the Mayo Clinic Hyperoxaluria Center, with funding from the National Institute of Diabetes, Digestive, and Kidney Disorders (NIH). The Mayo Clinic Hyperoxaluria Center is sponsored by the Oxalosis and Hyperoxaluria Foundation. An international advisory panel of experts has helped to guide its development. The Registry allows each patient's physician or health care provider to enter information such as an individual patient's age at first symptoms, kidney function, and progress over time. The web site for information entry is secure, password protected, and the patient is identified by a code number known only to the entering health care provider. Information for an individual patient can only be viewed by the entering provider and by Registry staff. In this way, confidentiality of information is strictly maintained.

Included in this report is a summary of the 148 primary hyperoxaluria patients who have been enrolled. To date, the registry includes patients from 29 U.S. states and 10 countries. The registry for Dent's disease has been enrolling patients for a shorter period of time, such that a summary report is not yet available.

Only by consolidating information regarding a large number of patients from many areas of the world will we be able to fully understand the primary hyperoxalurias and Dent's disease and to learn better ways of caring for patients with these disorders. All primary hyperoxaluria patients and Dent's disease patients and their care providers are strongly encouraged to participate.

Information regarding patient enrollment can be obtained from the Registry coordinator at hyperoxaluriacenter@mayo.edu or toll free at 800 270-4637.

Additional information regarding the Registry is available at http://mayoresearch.mayo.edu/mayo/research/nephrology/registry.cfm. Furthermore, see the following publication: Lieske et al "International Registry for Primary Hyperoxaluria" American Journal of Nephrology, May 2005.

To learn more about the International Registry for Hereditary Calcium Stone Diseases, please click here: http://mayoresearch.mayo.edu/mayo/research/nephrology/registry.cfm

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