We are excited to announce the 2019 Parkinson's Foundation Learning Institute in collaboration with the University of Minnesota Morris K. Udall Center of Excellence in Parkinson's Disease Research. Are you interested in applying but have some questions? We have answered some frequently asked questions below.
Contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) or firstname.lastname@example.org if you have questions not answered below.
Q. Who can apply as a Research Advocate?
A. People with Parkinson's disease (PD) and care partners who live in the United States or Puerto Rico can apply. You may apply individually or as a team. The team must be a person with Parkinson's and a care partner.
Q. What do we look for in a Research Advocate?
A. We look for people who have a common interest in Parkinson's research. Our goal is to have people from different background with different experiences. We look for people who want to learn how to educate their community about research and work with researchers.
Q. Do Research Advocates need to know a lot about research before coming to the training?
A. No. We accept Research Advocates with a range of knowledge. Some people come to the training who are new to research. Some people come to the training who are people with Parkinson’s who happened to work as researchers.
Q. What should I prepare before I apply to the training?
A. You can think about how you would like to be involved in research. For example, do you want to educate your community? Do you want to work with a researcher to design a study? If you have participated in research be prepared to tell us about that. You may submit a resume, information about work or volunteer experience and references if you would like to do so. However, a resume and references are not required to apply. The application will explain more about these questions. You can save the application and come back to it later if you need to think about something.
Q. Will you cover any training expenses?
A. We will cover all expenses for you. (registration, travel, hotel, accommodation, meals, etc.)
Q. What type of courses will I take at the training?
A. At the training, you will learn how you can play a part in research. Courses include current research in PD, how research works and how to work with researchers and your community.
Q. Who teaches courses at the training program?
A. Researchers, current Research Advocates and Parkinson’s Foundation and University of Minnesota staff members teach courses. Guests speakers come from places like the Food and Drug Administration (FDA) to tell you how you can play a part in their organization.
Serving as a Research Advocate
Q. What do Research Advocates do?
A. Research Advocates work with researchers and their communities in many different ways. Examples:
- They educate their communities about research.
- They talk to researchers about research priorities.
- They also improve studies be making sure it is easy for people to participate.
- Finally, they work with organizations like FDA to influence how research is done.
Q. What commitment is involved in becoming a Research Advocate?
A. Research Advocates spend a minimum of three hours per month activities. This includes a monthly one-hour conference call to tell us about your activities. This helps us track our success. It also includes any projects you are working on.
Q. After attending the training, will Research Advocates receive ongoing support from the Parkinson's Foundation and University of Minnesota University?
A. Yes. The training is just the beginning. You will get one-on-one support with your work. We will help you make connections to researchers and work on projects. We also hold monthly conference calls to keep you up to date on research and develop new skills.
Q. What if I'm not ready to make the commitment to become a Research Advocate but I'm interested in learning more?
A. We invite you to take part in the Parkinson’s Foundation’s Parkinson's Advocates in Research online course, coming in 2019, where you will learn more about clinical research and research advocacy.
For more insights on this topic, listen to our podcast episode “Personalized Medicine: The Voice of the Patient”.