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Work with Patient Advocates

Are you a scientist working in the field of Parkinson's? Benefit from insider knowledge on your next Parkinson's research study by working with one of PDF's trained patient advocates.

In recent years, patient engagement has become a buzzword in medical research.  In fact, it is becoming common for funding institutions to require that scientists involve patients as a condition of their grants.  At PDF, we think this is exciting, but we also know that it might seem daunting for professionals to identify people with Parkinson’s as potential partners and figure out how to involve them in research.

Whether you are here because your funding agreement asks you to involve patients in research, or you’re looking for insider knowledge on recruitment strategies, we can help.

About Our Patient Advocates

PDF is available to match you with trained patient advocates, and advise you on the roles they can play throughout all stages of research - from preclinical to phase IV studies. Through PDF’s Parkinson’s Advocates in Research program, we have a network of nearly 230 Research Advocates who are invested in helping to successfully bring your study to completion. 

What should you know about our Research Advocates?

  • They are all living with Parkinson’s or care partners.
  • They have all undergone intensive training through the Parkinson’s Advocates in Research program to understand the basics of PD science and the drug development process.
  • Already, this group is working with more than 400 research professionals to advance drug development, increase recruitment and inform the their peers about research.
  •  Among their roles, they serve on FDA committees, volunteer for local IRBs, and educate their local communities about research opportunities.

How Can PDF Research Advocates Help You?

View our brochure here to see how PDF Research Advocates can help throughout all stages of research and drug development. They can:

  • Advise you on what type of research is viewed as most relevant to the Parkinson’s community and the types of studies in which people would be most willing to participate.
  • Consult on study design to ensure studies maximize the number of people who are able and likely to enroll.
  • Assisting in writing grants.
  • Inform the Parkinson’s community about opportunities to participate in your study through support groups, conferences and one-on-one outreach, directly boosting recruitment efforts.
  • Help to communicate study results at medical meetings or support groups.

Case Studies:

  • Struthers Parkinson’s Center in Minnesota is collaborating with PDF Research Advocates Kim and Libbe Erickson on a study to understand why research participants continue or discontinue participation in clinical trials, with the goal of using the results to better retain participants in future clinical trials.
  • The Parkinson’s Study Group has included PDF Research Advocate Jane Denmark of Alabama on the steering committee for its STEADY-PD phase III isradipine trial funded by the National Institute of Neurological Disorders and Stroke (NINDS), where Jane helps to review quality control, experimental design, statistical analysis and overall investigative direction of the study.
  • Columbia University Medical Center in New York City and Beth Israel Deaconess Medical Center in Boston, MA have benefited from a study transportation program started by PDF Research Advocate Steve DeWitte. His efforts have resulted in more 30 volunteers participating in several studies at both institutions by transporting them by van from Connecticut.

Learn More & PAIR Up for an Advocate

If you are interested in working with a PDF Research Advocate, please contact the Parkinson’s Disease Foundation at info@pdf.org or (800) 457-6676. We can discuss projects you have in mind, as well as suggest ways to collaborate with Research Advocates to improve your studies and speed the research process.