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Patient Engagement

Are you a researcher working in the field of Parkinson's disease (PD)? Working with Parkinson’s Foundation trained Research Advocates can benefit your research study and provide you with insider knowledge.

Patient engagement is increasingly required as a key component to enrich the development of studies, which is one of the reasons we train Parkinson’s Foundation Research Advocates — people with Parkinson’s and caregivers — to collaborate with research teams and provide their input. Research advocates can help with study design, ultimately ensuring better compliance of study participants. They can identify the priorities of the patient community, ensuring your study addresses the issues that matter most to people with Parkinson’s. In study recruitment, patient advocates can also help fill your studies faster.

How Can the Parkinson’s Foundation Help?

The Parkinson’s Foundation has been training and supporting people with Parkinson’s and caregivers in their roles as Research Advocates for more than six years. We work with you in developing your patient engagement strategy. We can also help you identify and partner with advocates through all stages of research and drug development. For example, the Parkinson’s Foundation has:

  • Worked with National Institute of Neurological Disorders and Stroke, the Parkinson’s Study Group, and principal investigators to identify patient leaders to serve on the steering committee, data safety monitoring board and recruitment and retention committee for the STEADY-PD phase III isradipine trial.
  • Trained advocates who participated in U.S. Food and Drug Administration (FDA) meetings to facilitate patient-focused drug development.
  • Coordinated a collaboration between Parkinson’s Foundation Research Advocates and a multi-center study that doubled the number of study participants in a month.
  • Funded partnerships between researchers and patient advocates. Through its Leadership Awards, the Parkinson’s Foundation financially supports collaborative projects between researchers and its Research Advocates. Like supporting the collaboration between a researcher at UC Berkley and Parkinson’s Foundation Research Advocates to study mood disorders in PD.

About Our Patient Advocates

The Parkinson’s Foundation can match you with trained Research Advocates and recommend how they can help in all research studies — 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 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 to understand the basics of PD science and how to advocate for the research interests of the Parkinson’s community.
  • They have collectively worked with more than 400 research professionals to prioritize research, influence stakeholders and inform studies.
  • Among their roles, they serve on U.S. FDA committees, sit on study steering committees and educate their local communities about research opportunities.

All Parkinson’s Foundation Research Advocates undergo intensive three-day training through the Parkinson’s Advocates in Research (PAIR) Learning Institute. In addition, they receive ongoing education and continual one-on-one support from Parkinson’s Foundation staff to ensure that they are well-prepared for their role of collaborating with research professionals and the community at-large.

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.

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

If you are interested in working with a Parkinson’s Foundation Research Advocate, please contact Karlin Schroeder, Community Engagement Director, at kschroeder@parkinson.org or (800) 473-4636. 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.

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