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Public Health Data Inventory

Parkinson's Disease Registry


Background

Parkinson’s disease (PD) is a chronic motor system disorder. As a result of 1996 legislation, Nebraska became the first and only state to create a population-based Parkinson’s disease registry. A registry provides information about the incidence of the disease in the populace. The purpose of the Parkinson's Disease Registry is to provide a central data bank of accurate, historical and current information for research purposes.

The Parkinson's Disease Registry Act provides for screening and collecting patient and family data that may be useful in detecting the incidence of and possible risk factors concerning Parkinson's disease and related movement disorders. The act also aids in planning for health care requirements and education needs.

Type of Data

The data are population-based for ongoing surveillance.

Data Collection Method and Availability

State statute requires that pharmacies and physicians report data directly to the Nebraska Department of Health and Human Services. Pharmacies report information semi-annually about patients who received a Parkinson’s disease drug that is being tracked as part of the registry.

Physicians are required to report information about patients who are newly diagnosed with Parkinson’s disease within 60 days of diagnosis, or they are to complete a patient confirmation form for patients submitted by pharmacies or patients who self-report to the registry that they have Parkinson’s disease. Patients are also identified for inclusion in the registry using state vital records. Registry data since 1997 are available.

Related Links and Reports

Nebraska Parkinson's Disease Registry Data & Data Request Form  

About Parkinson's Disease

Data Contact

Nebraska Department of Health and Human Services
Division of Public Health
Office of Health Statistics
301 Centennial Mall South
PO Box 95026
Lincoln, NE 89509
Phone: (402) 471-8582