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Parkinson’s Organizations Join to Fund Registry in Nebraska

NEWYORK, NY — The American Parkinson Disease Association (APDA) and The Michael J. Fox Foundation for Parkinson’s Research (MJFF) have announced that they will co-fund the Nebraska Parkinson’s Disease Registry with a three year commitment. MJFF is to provide $35,000 which will cover current year operations and APDA will provide $40,000 to cover two subsequent years of operations. The funding from both will reinstate the Nebraska Registry (suspended in October 2004 for budgetary reasons), allowing researchers to collect data with accurate, historical and current information on Parkinson’s patients.

“The reinstatement of the Nebraska Registry serves as a stepping stone for Parkinson’s research and the Nebraska-specific data can provide scientists with a solid understanding of the role geography plays in Parkinson’s Disease,” said Joel Gerstel, executive director of APDA.

“Funding of the Nebraska Registry will enable researchers to understand Parkinson’s trends as they present themselves in a population,” said J. William Langston, MD, chairman, executive committee of Fox Foundation’s scientific advisory board.

“The reinstatement of the Registry and establishment of a similar registry in California, make it possible for researchers to collect data on how the disease varies geographically. This is a vital source of information which could help lead to the discovery of the cause of Parkinson’s disease.”

The Nebraska Parkinson’s Disease Registry was the first operational registry for the disease in the U.S., offering researchers a valuable tool in amassing epidemiological data.  The Registry has already allowed researchers to measure prevalence in the urban Omaha area (3.48 per 1,000 of those age 60 or more had Parkinson’s) versus the less populated agricultural central and western regions (14.82 per 1,000 and 11.50 of 1,000 respectively).

In 2004, legislation to establish the California Parkinson’s Disease Registry was enacted, and a pilot project is currently being developed, funded by both The National Institutes of Environmental Health Sciences (NIEHS) of the National Institutes of Health as well as by the Michael J. Fox Foundation.

The Nebraska Registry develops a resource for recruiting a valid sample for assessing exposure to a wide range of risk factors.  The Parkinson’s Disease Registry Act (“The Act”) was enacted by the Nebraska legislature in 1996 to provide a central data bank of information for research purposes. The Registry collected data from early 1997 until its suspension in October, 2004.  The Act requires that physicians and pharmacists report individuals diagnosed with Parkinson’s and patients taking anti-Parkinson’s medications to the Nebraska Department of Health and Human Services Regulation and Licensure. 

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