December 2, 2021
This week, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) announced a major expansion of its Parkinson’s Progression Markers Initiative (PPMI). First launched in 2010, PPMI is a longitudinal, observational, multi-center study that aims to identify and assess progression of clinical features, digital outcomes, imaging, biologic, and genetic markers of Parkinson’s disease (PD) to speed scientific breakthroughs and new treatments. As part of the expansion, the study will triple in-person enrollment at nearly 50 clinical sites across 12 countries and recruit over 100,000 participants online, including individuals without Parkinson’s, those newly diagnosed and those with progressing disease.
Now, anyone in the United States over age 18 can participate in PPMI through the study’s online participant portal. Evidation created and is administering the web-based research portal for PPMI’s online portion of the study and is proud to help enable this critical work of online enrollment and participation in the most significant effort yet to better characterize and understand Parkinson’s disease markers and onset. Evidation has worked hand in hand with MJFF to design and build an accessible and privacy-protected participant experience with an emphasis on collecting data in a user-friendly way.
EXPANDING AND SCALING PARKINSON’S RESEARCH, FASTER––WITH DIGITAL HEALTH TOOLS
As the population ages, we are facing a pandemic of neurodegenerative diseases: neurological diseases are now the leading cause of disability worldwide. Neurodegenerative diseases have a profound impact on patients diagnosed, their families, and their communities. Among neurodegenerative diseases, the prevalence of Parkinson’s disease is fastest growing—the Journal of the American Medical Association predicts that over 12.9 million people will be affected by 2040. Yet unlike most infectious diseases, the exact causes of Parkinson’s are not yet fully understood. PPMI is a cornerstone of brain disease research and made possible through public-private support. Its collaboration has created an unparalleled robust open-access data set and biosample library to better characterize Parkinson’s disease, understand its onset and progression, and advanced treatments.
Given the projected growth and impact of Parkinson’s disease, there is a need to rapidly expand the types of data collected and scale disease-specific research, faster. Digital health tools are uniquely useful in better understanding neurodegenerative diseases, specifically Parkinson’s disease. Neurodegenerative diseases are underdiagnosed and often misdiagnosed as they involve a constellation of physical, psychological, and socioemotional symptoms that are not always well characterized by infrequent, episodic clinical interactions. Electronic patient reported outcomes and person-generated health data from active and passive data collection methods, including wearables, show immense promise in characterizing the complex, longitudinal aspects of neurodegenerative diseases.
THE EVIDATION PLATFORM
The progressive nature of Parkinson’s disease means that creating a study experience that engages participants at scale for multiple years is critical to fulfilling the research objectives. Every 90 days, participants are encouraged to accomplish a set of activities that will allow researchers to assess their individual risk of Parkinson’s so that researchers can invite select participants to engage in additional diagnostic testing.
Over time, the aggregate results of the self-reported symptoms and diagnostic test results will enable researchers to identify and assess disease progression more effectively. The capabilities of Evidation’s web-based research platform for PPMI’s online platform will allow ongoing online collection of cross-sectional and longitudinal data from people with and without PD. The participant experience will be continually modified and updated to accommodate study objectives and changes in the research environment over time.
Across all its research and consumer programs, including PPMI, Evidation prioritizes user privacy and consent. The data contributed to PPMI is de-identified and shared only 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.
In addition to its work with The Michael J. Fox Foundation, Evidation has pioneered research using multimodal sensor streams, including apps and wearables to characterize neurodegenerative disease. Evidation is also collaborating on a study to determine if sensor data can be used to develop digital measures to accelerate drug development for Alzheimer’s disease.