Parkinson's Outcome Project
The purpose of this research study is to collect data on individuals with Parkinson disease to better understand the illness and ultimately improve the care and survival of those individuals with the disease. The National Parkinson Foundation’s Patient Registry was started in 2009 as a means to monitor important trends in the Parkinson population and to improve understanding, treatment and survival.
We wish to store your medical information and potentially use it in future research. Many different kinds of research use medical information. Some researchers may develop new tests to find diseases. Others may develop new ways to treat or even cure diseases. In the future, some of the research may help to develop new products, such as tests and drugs.
If you agree to participate in the registry, your medical information will be stored in the medical information bank, for example:
- Your name
- Record identifier
- Medical history
- Date of clinic visits
- Clinic/hospital and physician names
- Marital status
- Patient living situation, availability of caregiver
- Caregiver employment status
- Patient engaging in activities outside home and attending support groups
- Parkinson disease specifics including year of onset, certainty of diagnosis, type, rest tremors, wearing-off periods, dyskinesia and Hoehn and Yahr stage
- Duration and frequency of Parkinson care
The study team will provide a full list of the information that will be included in the registry.
If you wish to join the registry or have additional questions, please contact Amanda Fessenden at:
- (352) 733-2431
Can be done from home
KeywordsParkinson disease, Parkinson's disease, Parkinson's disease - resources
Principal InvestigatorIrene Malaty, MD
Sponsoring GroupDepartment of Neurology
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Studies listed on this site have been approved by a UF Institutional Review Board (IRB), which works to ensure the welfare and rights of research participants as required by federal regulations. Study listings are provided by the UF Clinical and Translational Science Institute in collaboration with UF research teams and the UF IRBs.