Parkinson's Disease Registry

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Public Health
 
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What would you like to do?

What would you like to do?

What you need to know

What you need to know

Parkinson's disease (PD) is a chronic motor system disorder that normally affects patients over the age of 50. Young-onset Parkinson's disease occurs in those aged 21-45. Common symptoms include tremors, muscle rigidity, slowness of movement, impaired balance and a shuffling gait.

The registry is a database that can be utilized for research on Parkinson's, for planning for health care requirements and for education of health care providers.  The law which created the PD registry specifies that information may be released to approved researchers.  Many research projects have been completed using our data, and several are in progress.

 

History

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During the 2001 Legislative session, the law creating the Parkinson's Disease Registry was briefly repealed, however LB152 revived the registry and gave the DHHS the responsibility to continue all operations.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.

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Reports

Data Requests

To request aggregate data from the registry that are not available on our website, please complete and return the following form:  Aggregate Data Request.

To request patient-specific data please complete and return the following forms:  Instructions For Request For Data, PDF Research Data Request, and the Confidentiality Agreement.

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Reporting Requirements

Please submit your information through our secure website. DHHS needs your email address to send you instructions.

PHARMACIES: The Reportable List of Drugs (in any generic or brand name form) effective January 1, 2019:

  • Azilect (if prescribed for times other than evening or bedtime only) 
  • Carbidopa/levodopa 
  • Mirapex (if prescribed for times other than evening or bedtime only)
  • Neupro
  • Requip (if prescribed for times other than evening or bedtime only)
  • Selegiline (except Emsam)
  • Stalevo

DO NOT report patients if the physician indicates that the drug is prescribed for RESTLESS LEG SYNDROME ONLY or if the drug is prescribed for EVENING OR BEDTIME USE ONLY.

PLEASE NOTE:

If you have no patients to submit for your semi-annual report, please send an email to jill.krause@nebraska.gov and state that you have no patients to report, the time period, and your pharmacy name and address.

Pharmacy and physician forms should be sent to:
P.O. Box 95026, Lincoln, Nebraska 68509-5026
 

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Contact

Jill Krause
Nebraska Parkinson's Disease Registry Data Coordinator
Phone Number
(402) 471-8582
Secure Fax Number
(402) 742-2830
Mailing Address
P.O. Box 95026, Lincoln, Nebraska 68509-5026