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Patient Engagement

Are you a scientist working in the field of Parkinson's disease (PD)? Patient engagement — involving people living with Parkinson’s — can benefit your next research study. Gain insider knowledge by working with one of the Parkinson’s Foundation’s trained patient advocates.

Patient engagement is increasingly required as a key component to enrich the development of studies The Parkinson’s Foundation understands that identifying potential partners with Parkinson’s and determining how to involve them in research might seem daunting for professionals. If you want to find out how working with patient experts can provide you with insider knowledge to improve your studies, we can help. 

About Our Patient Advocates

The Parkinson’s Foundation can match you with trained patient advocates and recommend roles they can play throughout all stages of research — from preclinical to phase IV studies. Through our Parkinson’s Advocates in Research program, we have trained a nationwide network of 280 Research Advocates invested in helping to successfully bring your study to completion. 

What should you know about our Research Advocates?

  • They all live with Parkinson’s or are care partners.
  • They have all undergone intensive training through the Parkinson’s Advocates in Research program to understand the basics of PD science, the drug development process and how to advocate for the research interests of the Parkinson’s community.
  • Collectively, they have worked with more than 400 research professionals to prioritize research, influence stakeholders and inform studies.
  • Among their roles, they serve on U.S. Food and Drug Administration (FDA) committees, sit on study steering committees and educate their local communities about research opportunities.

Case Studies

Prioritizing Research

  • The Parkinson’s Foundation brings pharmaceutical companies and Research Advocates together to design trials with endpoints that are most important to the Parkinson’s community. (hyperlink to Pfizer poster)

Influencing Stakeholder

  •  Struthers Parkinson’s Center in Minnesota, a Center of Excellence, collaborated with Parkinson’s Foundation Research Advocates Kim and Libbe Erickson on a study to understand why research participants continue or stop participation in clinical trials, with the goal of using the results to better keep participants in future clinical trials.

Improving Studies

  • The Parkinson’s Study Group has included Parkinson’s Foundation Research Advocate Becky Houde on the steering committee for its SURE- PD phase III inosine trial funded by the National Institute of Neurological Disorders and Stroke (NINDS), where Houde helps review quality control, experimental design, statistical analysis and overall investigative direction of the study.

Learn More & Pair Up for an Advocate

Please contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org if you are interested in working with a Research Advocate. We can discuss your project and suggest ways to collaborate with Research Advocates to improve your studies and speed the research process.

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