Parkinson's disease (PD) is a chronic brain disorder that causes motor and non-motor symptoms which include unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination.
Symptoms usually begin gradually and worsen over time. As the disease progresses, people may have difficulty walking and talking. They may also have mental and behavioral changes, sleep problems, depression, memory difficulties, and fatigue.
It 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 Parkinson's research, for planning for health care requirements and for the 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.
Studies Using Parkinson's Disease Data
Parkinson's Disease Registry Legal Requirements 2024
History
Nebraska became the first 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.
The Parkinson's Disease Registry Advisory Committee meets annually to review the 'List of Reportable Drugs' and discuss registry business. 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
If you have an NPDR account, please login at https://my.ne.gov.
If you DO NOT have an NPDR account, please complete the following brief survey: https://redcap.link/krgyfrca
DO NOT complete the survey if you have already been assigned an account, even if it has been disabled.
Once you have completed the survey, the NPDR Help Desk Team will create an account for you, including a temporary password that you will need to change to a more secure personalized password.
If your account hasn't been accessed in 90 days it will be automatically disabled and the password expires. For assistance contact our NPDR Help Desk via email at DHHS.NPDR@nebraska.gov.
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 options:
REPORTABLE LIST OF DRUGS
(in any generic or brand name form) EFFECTIVE JANUARY 1, 2024:
| GENERIC DRUG NAME | CURRENT BRAND NAMES |
| CARBIDOPA/LEVODOPA | Sinemet, Parcopa, Duopa, Rytary, Dhivy, Crexont |
| CARBIDOPA/LEVODOPA/ENTACAPONE | Stalevo |
| RASAGILINE | Azilect |
| SELEGILINE | Eldepryl/Zelapar |
The registry's advisory committee decided to remove these three drugs from required reporting: Pramipexole, Ropinerole and Rotigotine beginning January 1, 2022.
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 the NPDR Help Desk Team at DHHS.NPDR@nebraska.gov and state that you have no patients to report, the time period, and your pharmacy name and address.
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