Nebraska Parkinson's Disease Registry

Nebraska became the first and only state to create a Parkinson’s disease registry as a result of 1996 legislation. The registry provides information about the incidence of the disease in Nebraska.

During the 2001 Legislative session, the law creating the Parkinson's Disease Registry was briefly repealed, however LB152 revived the Registry and gave the DHHS the responsibility to continue all operations. Terminated in October 2004, the Registry was reactivated February 1, 2006.

The Parkinson’s Disease Registry Advisory Committee meets each December. Members of the Advisory Committee represent consumers, researchers, and medical and pharmaceutical professionals.

Only new Parkinson’s cases diagnosed since January 1, 1997, are required to be reported, but the registry also includes data on persons who had a diagnosis of Parkinson’s prior to that time.

The Registry is a database that can be utilized to achieve the goals of statistical identification for research detecting the incidence of and possible risk factors concerning Parkinson’s, planning for health care requirements, education of health care providers and hopefully a cure for the disease.  The law which created the Parkinson’s Disease Registry specifies that information may be released to approved researchers.  Several research projects are either pending or already in progress.

To request aggregate data from the registry that are not available on our data site above, click on Aggregate Data Request.  PDFInstructions For Request For Data, PDFResearch Data Request, and the PDFConfidentiality Agreement.


The Nebraska Parkinson’s Disease Registry is possible in part due to the contributions of
the American Parkinson’s Disease Association and the Michael J. Fox Foundation.

Contact
Jill Krause
NE Department of Health and Human Services
Public Health/Health Statistics
PO Box 95026
Lincoln, NE 68509-5026
Phone (402) 471-8582
E-mail jill.krause@nebraska.gov

Public Health Page