Parkinson's Foundation Research Advocates ensure more efficient and effective research when it comes to Parkinson’s disease (PD). We pair people with PD and caregivers as primary research partners with scientists, industry and government.
Research Advocates Main Objectives
Research Advocates change research through:
- Prioritizing research
- Improving studies
- Influencing stakeholders
Despite promising research, there is neither a cure for Parkinson's nor medications that can reverse its course. But there can be.
We can make research more efficient and effective by ensuring that people with Parkinson's and care partners are primary partners in research alongside scientists, industry and government. Our signature national patient engagement in research program, Parkinson's Foundation Research Advocates (formerly known as PAIR), makes this partnership a reality by bringing together the people who live with Parkinson's and the people developing new treatments. Research advocates also work in their communities, raising awareness and educating others on the importance of participating in Parkinson’s research.
How to Become a Research Advocate
The Parkinson’s Foundation has trained more than 400 people with PD and care partners as Research Advocates since 2008.
To become a research advocate:
- People with Parkinson’s and care partners must connect with the patient engagement team to become a Research Advocate. We are looking for people with an interest in research and a willingness to work with researchers on a variety of projects.
- Once selected, Research Advocates undergo trainings, where our patient engagement team provides them with the knowledge and skills necessary to pair up with scientists and health professionals. The trainings can be in person by attending one of the Foundation’s Learning Institutes or by completing our online course.
- Next, our team will help facilitate partnerships between Research Advocates and professionals at the front lines of research at academic institutions, industry, and government.
Training and Locations
Thank you for your interest in volunteering as a Research Advocate. The first step is to complete the Parkinson’s Foundation Volunteer Orientation. You can register for the orientation by visiting Parkinson.org/VolunteerOrientation.
The Foundation offers training to become a research advocate both through in-person training and an online course. Please see further details on the training options below.
Learning Institute Training
We will announce the next Learning Institute soon. If you are interested in receiving the announcement when it is released, please email PatientEngagement@Parkinson.org.
Online Research Advocacy Course
The online course is self-paced and can be completed as one's schedule allows. If you would like more information about the program or course, please email PatientEngagement@Parkinson.org.
The Learning Institute is a Parkinson’s Foundation training program for people with Parkinson’s and care partners who would like to serve as Research Advocates. This program is an educational and interactive course in the research process. It will prepare participants to educate their communities about research and work with research teams to design and implement studies.
Leading Parkinson’s experts teach Research Advocates the science of PD research and explore the process of developing new treatments. Parkinson’s Foundation staff, international thought leaders in patient engagement in research, teach Research Advocates the skills needed to collaborate with teams at the front lines of research.
When and where is the next Learning Institute?
We will announce the next Learning Institute soon. If you are interested in receiving the announcement, please email PatientEngagement@Parkinson.org. Remember, you can complete the online course in research advocacy if we have not yet announced the next Learning Institute. Completing the online course does not exclude you from participating in an in-person Learning Institute.
Our History of Patient Engagement
The Parkinson's Foundation has long been dedicated to making patient engagement a reality in the Parkinson's community.
Patient Engagement Timeline
- 2001: we established www.PDtrials.org as the first website and community coalition to help people with PD understand and find clinical trials.
- 2006: we established the Parkinson’s Foundation People with Parkinson’s Advisory Council, the first-ever PD community council.
- 2008: we held our first research advocacy training, the Learning Institute, in New York.
- 2013: we launched our Community Choice Research Awards, a "people's choice award" of Parkinson's research where the PD community has direct input on the research we fund.
2015: we partnered with the Food and Drug Administration, with an opportunity for an advocate to participate in a workshop, to provide patient perspective on medical device labeling.
2017: we developed a robust portfolio of pharmaceutical collaborations and expanded patient engagement opportunities for research advocates.
2018: we launched Parkinson's Foundation Surveys to periodically ask people with PD, their care partners, and medical professionals about specific aspects of living with and treating Parkinson’s. This initiative aims to advance Parkinson’s care through understanding the experiences of people living with this disease and widely sharing those experiences with the PD community.
2019: we received an award to develop Parkinson's Advisors in Research Training and Collaborative, a first of it's kind model to develop patient advisory boards at five Parkinson's Foundation Centers of Excellence.
2021: we launched a partnership Parkinson's UK and a global pharmaceutical company, UCB, to establish a Patient Engagement Council for Parkinson's Research.
2023: we held the first Learning Institute for the Black and African American Parkinson’s community, which focused on understanding their needs and priorities as it relates to Parkinson’s disease and research, aligning with our commitment to remove barriers to care and make research inclusive.
Today, we are leading the field in innovations in patient engagement. Through strengthening the role of patient advocacy organizations, to creating international collaborations, to co-developing news tools, we advance the science of patient engagement and bring new models to the field.
If you have the time and the desire to help yourself and others, I strongly encourage you to seek out and get involved in clinical studies. Your involvement could change everything about how we study, treat and/or cure Parkinson’s disease!
Interested in learning more about our Research Advocate program? Below we answer some frequently asked questions. Contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) or PatientEngagement@Parkinson.org if you have questions not answered below.