Despite promising research, there is neither a cure for Parkinson's disease (PD) 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 PAIR), makes this partnership a reality by bringing together the people who live with Parkinson's and the people developing new treatments.
How It Works
- People with Parkinson’s and care partners must apply to be a Research Advocate. Applications usually open yearly in the first half of the year. 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 in-person trainings and an online course (coming in 2019), where our patient engagement team provides them with the knowledge and skills necessary to pair up with scientists and health professionals.
- From there, we help facilitate partnerships between Research Advocates and professionals at the front lines of research at academic institutions, industry and government.
Research Advocates Main Objectives:
- Prioritizing research
- Improving studies
- Influencing stakeholders
How to Become a Research Advocate:
Since 2008, the program has trained more than 300 people with PD and caregivers as Research Advocates.
Required training: All Research Advocates must complete a three-day training program at one of the Foundation’s Learning Institutes. Leading experts from the field teach them about the science of Parkinson’s and new treatment developments (see our curriculum here), while our patient engagement team provides them with the skills necessary to co-create research.
Research Advocates in action: Training is just the beginning. The entire program works closely with Foundation staff and each other to identify patient engagement opportunities, take part in ongoing education, share resources and network with the research community.
We recommend these trainings to individuals who can commit at least three hours a month to research advocacy work.
- Find a Training
- Apply for a Training
- Learn About Our Advocates
- Learn About Our Patient Engagement Program
To learn more about this program or speak with the Parkinson’s Foundation about partnering with a Research Advocate at your institution, clinical study or support group, please contact our Helpline at 1-800-4PD-INFO (473-4636) or PatientEngagement@Parkinson.org.
For more insights on this topic, listen to our podcast episodes “Personalized Medicine: The Voice of the Patient”, "The Skinny on Clinical Trials in PD" and “Retention Rates in Longer Clinical Studies”.