The Michael J. Fox Foundation for Parkinson’s Research (MJFF) announces a major expansion of its landmark Parkinson’s Progression Markers Initiative (PPMI) study.
The study is reopening to enroll vastly more participants, notably including online enrollment of up to 100,000 individuals with and without a Parkinson’s diagnosis. First launched in 2010, PPMI is a critical component of the Foundation’s mission to accelerate better treatments, cures, and even prevention of the disease.
The study is open to new participants through year-end 2023. These participants will share data online and through a smartphone app; some also will contribute biological samples and undergo assessments at nearly 50 clinical sites around the world.
In order to accelerate frameworks for prevention of Parkinson’s disease, PPMI will work to characterize Parkinson’s risk by studying cohorts representative of the full continuum of disease — those not diagnosed; the newly diagnosed; and those with progressing disease.
“The large-scale expansion of PPMI promises to change our understanding of Parkinson’s disease diagnosis and enable the development of new PD therapeutics. PPMI data will provide researchers globally the tools to uncover key biological and clinical changes that occur both once PD has begun and more importantly even before symptoms arise with the ultimate goal of disease prevention.”— PPMI’s Principal Investigator Ken Marek, MD, scientific advisor to MJFF and president and senior scientist of the Institute for Neurodegenerative Disorders in New Haven, Connecticut
Diverse Cohorts of Volunteers Needed for Study
Anyone over age 18 in the United States can participate through the study’s online platform. Some volunteers will be invited to enroll in person at a PPMI site. (Participating centers outside the United States also are recruiting high-interest groups.) The valuable data on health and disease collected online will complement the rich data and biological samples contributed at in-person visits from:
- People diagnosed with Parkinson’s in the past two years and who are not yet taking medication
- People age 60 and older who do not have Parkinson’s, but are living with certain risk factors, including:
- A parent, sister, brother or child with Parkinson’s
- A genetic mutation linked to Parkinson’s (GBA, LRRK2, SNCA, PRKN, PINK1)
- Acting out dreams while asleep (REM sleep behavior disorder)
- People with no known connection to Parkinson’s who wish to participate as control volunteers
“Tapping the power of community to expand our knowledge of Parkinson’s biology and the patient experience is how MJFF works to deliver practical results patients can feel in their everyday lives. By amplifying the patient voice and empowering members of the broader community to contribute to a cure, PPMI promises to fundamentally alter how scientists understand Parkinson’s and conduct brain research.”— MJFF CEO and Co-Founder Deborah W. Brooks, who has participated in PPMI as a control volunteer since 2010
Multiple measures are in place to safeguard PPMI information contributed online. All identifiable information is kept in a secure database. Every measure is taken to protect the privacy of this information, including use of the most rigorous security protocols available, regular security updates, and other technological and administrative processes. The data contributed to PPMI is de-identified and shared with qualified researchers who must apply for access and sign a form agreeing to protect data privacy.
Participants’ information is never sold and will never be shared outside the research community. The online portion of the PPMI study is built on Evidation’s research platform. Evidation worked hand in hand with MJFF to create an accessible, user-friendly, and privacy-protected participant experience.
PPMI’s expansion comes as The Michael J. Fox Foundation recognizes 20 years of research progress and an innovative model that has generated more than $1.5 billion dollars to support global research programs.
“When the Foundation started in 2000, we set out to change the game on how Parkinson’s research gets done. Two decades later, I’m proud that we have continued to meet this challenge and have become more than just a research organization, but a space where patients bring their wisdom and energy. PPMI’s expansion is about getting this done, curing Parkinson’s, boiling down to a biomarker that we can identify early on and prevent the disease from ever impacting another family.”— Michael J. Fox
[Source(s): The Michael J. Fox Foundation for Parkinson’s Research, PR Newswire]