Parkinson's Outcome Project

Purpose

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
  • Demographics
  • 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: 

Age

18 to 65
65 and over

Gender

Male
Female

Monetary compensation

No

Can be done from home

No

Keywords

Parkinson disease, Parkinson's disease, Parkinson's disease - resources

Principal Investigator

Irene Malaty, MD

Sponsoring Group

Department of Neurology

Contact Information

amanda.fessenden@neurology.ufl.edu

(352) 733-2431


Be an Informed Participant

Before deciding to participate in a research study, take time to learn about clinical research, how it's conducted and your rights as a research participant. Following are some helpful resources from independent sources. Always remember that a clinical research study is research, not treatment.

Know Who to Contact

  • Eligibility: For questions about a specific study and who is eligible to participate, call or email the contact person listed for that study.
  • Your Rights: For questions about your rights as a research participant, contact the UF Institutional Review Boards at 352-273-9600.
  • Feedback: For general questions or feedback about study listings, email the UF Clinical and Translational Science Institute at CTSI-Studies-L@lists.ufl.edu.

Other Resources

  • HealthStreet: Health-focused services, classes and events, and opportunities to participate in research.
  • ResearchMatch.org: Join a national registry of volunteers willing to be contacted about research studies.

For Research Teams