Are you a researcher working in the field of Parkinson’s disease (PD) studies? Including patient perspective in your research can offer insights to help ensure a timely and efficient research process.
We train Parkinson’s Foundation Research Advocates, people with Parkinson’s and caregivers to collaborate with research teams and provide their input. By including patient advocates in study design, you can help ensure better compliance of study participants. By knowing the priorities of the patient community, you can design studies that address issues that matter most to people with Parkinson’s. By collaborating with patient advocates on study recruitment, you can 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 are available to work with you in developing your patient engagement strategy. We can also help you identify and partner with advocates throughout 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 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. Awardees include the Struthers Parkinson’s Center in Minnesota, which is working with Parkinson’s Foundation Research Advocates Kim and Libbe Erickson 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. We also supported this collaboration between a researcher at UC Berkley and Parkinson’s Foundation Research Advocates to study mood disorders in PD.
About Our Patient Advocates
Parkinson’s Foundation Research Advocates are people with Parkinson’s or caregivers who work as volunteers to advance drug development, increase study recruitment and inform peers about research. This group of almost 300 individuals worked with more than 400 research professionals across the country. Among their roles, they serve on FDA committees, volunteer for local institutional review boards 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 to understand the basics of PD science and the drug development process. 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.
Learn More & PAIR Up with an Advocate
If you are interested in working with a Parkinson’s Foundation Research Advocate, please contact Karlin Schroeder, Community Engagement Director, at firstname.lastname@example.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.