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During the 2001 Legislative session, the law creating the Parkinson's Disease Registry was briefly repealed, however LB152 revived the registry and gave the DHHS the responsibility to continue all operations.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 November. 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.
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, Research Data Request, and the
Confidentiality Agreement.
Reporting Requirements For Pharmacies
GREAT NEWS! To ease the burden of reporting to the Nebraska Parkinson's Disease Registry we highly encourage the use of electronic reporting.
Electronic reporting of reportable drugs is now available using one of these three options:
PLEASE COMPLETE THE FOLLOWING SURVEY REGARDING THE ELECTRONIC OPTION YOU PREFER.
https://cip-dhhs.ne.gov/redcap/surveys/?s=J7M3Y894HELWCXYD
Our team will contact you to set up electronic submission prior to the July 31, 2022 deadline to submit the next semiannual report.
REPORTABLE LIST OF DRUGS (in any generic or brand name form) EFFECTIVE JANUARY 1, 2022:
| GENERIC DRUG NAME | CURRENT BRAND NAMES |
| CARBIDOPA/LEVODOPA | Sinemet, Parcopa, Duopa, Rytary, Dhivy |
| CARBIDOPA/LEVODOPA/ENTACAPONE | Stalevo |
| RASAGILINE | Azilect |
| SELEGILINE | Eldepryl/Zelapar |
The registry's advisory committee removed these three drugs from required reporting: Pramipexole, Ropinerole and Rotigotine.
FOR EACH PATIENT INCLUDE:
- Name
- Address
- Date of Birth
- Prescriber name and address
- Pharmacy name, address, and phone number
*REPORTS ARE DUE EVERY JANUARY 31 AND JULY 31 FOR THE PREVIOUS SIX MONTH'S DATA*
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.
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