In December, The Michael J. Fox Foundation (MJFF) hosted a webinar with expert panelists moderated by MJFF Deputy CEO, Head of Research, Sohini Chowdhury. Panelists discussed the Foundation’s landmark Parkinson’s Progression Markers Initiative (PPMI) study — its expansion, impact and the critical role volunteers can play in speeding a cure.
We received hundreds of questions from our live audience, and here share answers to some of the most common questions asked.
Who can be part of PPMI?
Anyone over age 18 in the United States can join the online part of PPMI. Get started today.
Sites in the United States and other countries are enrolling certain groups:
- People recently diagnosed with Parkinson’s and not yet taking medication
- People who act out dreams while asleep (REM sleep behavior disorder)
- Parents, sisters, brothers and children of people with Parkinson’s
- People with a known genetic mutation linked to Parkinson’s (GBA, LRRK2, SNCA, PRKN, PINK1)
- Control volunteers with no known connection to disease
Can I be part of PPMI if I live outside the U.S.?
Yes! Medical centers in 12 other countries are or will soon begin recruiting PPMI volunteers (see bulleted list above). View a list of sites and connect with the PPMI team to learn more. The PPMI study team is also exploring ways for international volunteers to participate online.
What do I do if I signed up for PPMI but haven’t heard back?
We’re grateful that you’ve raised your hand to participate in PPMI and apologize your next steps aren’t clear. Have you signed up for the online part of PPMI? Please visit ppmionline.org to get started. Depending on the information you provide, you may be invited to complete remote screening or visit a medical clinic for additional PPMI testing that can’t be done over the internet.
Additional questions? Please contact firstname.lastname@example.org.
What happens to the data from PPMI?
PPMI has put multiple measures in place to safeguard the information volunteers contribute. The scientific data volunteers contribute to PPMI is aggregated (meaning compiled with data from other participants), de-identified (meaning name and identifying information are removed) and shared with qualified researchers for use in studies to advance understanding of Parkinson’s disease.
What scientific results are coming out of PPMI?
Over the last decade, PPMI participants have contributed data and samples to the most robust Parkinson's data set ever created. That data — downloaded by researchers more than 8.5 million times — is leading to significant findings toward better measures and treatment of disease. PPMI data has also been used to help launch more than 20 studies testing new Parkinson’s treatments.
What has PPMI found? Brain imaging can detect dopamine loss in early Parkinson's. Newly identified genetic variants are linked to the disease. And PPMI data is helping scientists gain a better understanding of the relationship between motor and non-motor symptoms and how that may impact someone’s course with disease. These results can point to new tests and therapies. Want to read more about recent findings? Check out our PPMI Dispatch blogs available at michaeljfox.org/ppmi-news.
Whether you have Parkinson’s or not, join the study that could change everything.