Mayo is one of those medical centers that sees rare cases, diseases that have been diagnosed only a hundred or a handful of times. That expertise is one of the reasons why the National Institutes of Health is funding a Rare Disease Center to be based at Mayo's Rochester campus. The grant that founded the Center is also funding a Rare Kidney Stone Consortium, headed by Mayo physician-investigators Dawn Milliner, M.D. and John Lieske, M.D. A variety of kidney disease registries will be established that will collect and track data, making it available to collaborating physicians and researchers. The consortium will also aid collaborations between doctors and patients in clinical research by working with patient organizations.
Dr. Milliner will focus on primary hyperoxaluria, a relatively rare disease that often causes kidney failure. Dr. Lieske will focus on Dent disease, a very rare disease that causes excessive calcium in the urine, resulting in kidney stones and kidney damage. Other principle researchers in the consortium are in New York and Iceland. For more on the effort, see www.rarekidneystones.org.