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Tue, March 19

NIH launches undiagnosed diseases program

The National Institutes of Health (NIH) has established a new clinical research program that will aim to provide answers to patients with mysterious conditions that have long eluded diagnosis. Called the Undiagnosed Diseases Program, the trans-NIH initiative will focus on the most puzzling medical cases referred to the NIH Clinical Center in Bethesda, Md., by physicians across the nation.

"A small number of patients suffer from symptoms that do not correspond to known conditions, making their care and treatment extraordinarily difficult. However, the history of biomedical research has taught us that careful study of baffling cases can provide new insights into the mechanisms of disease - both rare and common," said NIH Director Elias A. Zerhouni, M.D.

"The goal of NIH's Undiagnosed Diseases Program is two-pronged: to improve disease management for individual patients and to advance medical knowledge in general."

To evaluate each patient enrolled in the new program, NIH will enlist the expertise of more than 25 of its senior attending physicians, whose specialties include endocrinology, immunology, oncology, dermatology, dentistry, cardiology and genetics.

An expert on rare genetic diseases will serve as director of the new program, and the NIH has developed a stringent referral process to ensure this program deals with those cases that have truly confounded medical experts. NIH physicians will be very selective when it comes to patient eligibility, and focus strictly on conditions that have not been diagnosed.

To be considered for this NIH pilot program, a patient must be referred by a physician and provide all medical records and diagnostic test results requested by NIH. Patients who meet the program's criteria - as many as 100 each year - will then be asked to undergo additional evaluation during a visit to the NIH Clinical Center that may take up to a week.

In organizing the Undiagnosed Diseases Program, NIH has reached out to patient advocacy groups that often serve as a source of information and support for people struggling with mysterious ailments.

For more information about the Undiagnosed Diseases Program, go to http://rarediseases

Physicians and patients with specific inquiries may call the NIH Clinical Center clinical information research line, at 1-866-444-8806.


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