Undiagnosed Disease Registry Bill Introduced in U.S. House

Press Release

Patients suffering from undiagnosed illnesses will have an improved chance of discovering successful treatment options if a bill introduced today by U.S. Rep. John Carter (R-TX) is passed into law.

Carter today introduced the "Charles August Long ‘Cal' Undiagnosed Disease Registry Act of 2009", HR. 2538 in the House. The bill is named for 5-year old Carl August Long ‘Cal' of Cedar Park, Texas, who passed away in December 2006 of an undiagnosed illness. The bill would create an Undiagnosed Disease Registry at the Centers for Disease Control (CDC) for maintenance of case records to advance the early detection, prevention, treatment, cure, and control of currently undiagnosed and unregistered diseases.

Congressman Carter introduced the bill this afternoon in a news teleconference with Mrs. Heather Long of Cedar Park, Texas, mother of the deceased. Long asked Carter to help with legislation following her son's loss, after the family struggled for three years to discover the underlying cause of the child's illness.

Carter, House Republican Conference Secretary, says a national database for undiagnosed illness would not only benefit children, but would be a health asset for the nation's veterans. "Nearly every war invariably produces veterans who have contracted previously unknown ailments and illnesses. This bill could significantly lessen the amount of time necessary to research and diagnose their symptoms and develop effective treatments. It could also provide an early warning system in the event our military personnel were unknowingly exposed to chemical or biological agents."

The National Institutes of Health recently began a program to provide help for patients suffering from undiagnosed disease, and to date has received over 2,000 requests for help. The Carter bill is designed to work with the current NIH effort to allow for a repository of all case information gathered at the CDC.

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