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MJFF Recognized for Our Commitment to Data Sharing


Last month at the annual meeting of the Critical Path for Parkinson's Consortium (CPP), The Michael J. Fox Foundation (MJFF) received the Data Sharing Pioneer Award. Dr. Diane Stephenson, executive director of CPP, presented the award to the Foundation in recognition of our commitment to access and usability in research data. Dr. Stephenson specifically noted how we facilitated CPP’s access to data from interventional studies we’d previously funded for incorporation into CPP’s integrated database.

CPP is a global collaboration among industry, academic institutions, governments and nonprofits. Its goal is to “foster consensus and data-driven research to increase efficiency, safety, and speed in developing new therapies” for Parkinson’s. Data sharing and access is critical to progress because it provides a consistent set of resources that removes barriers to entry for researchers. Mark Frasier, our Senior Vice President of Research Programs, explains, shared data can, “lead to a better understanding of the cause, variability and progression of the disease, which will ultimately impact how we treat patients and develop new drugs for Parkinson's.”

MJFF approaches data sharing and access in multiple ways. Most directly, we provide access to data sets from sponsored studies and other trials through our website. This includes the largest patient-reported outcomes cohort available through Fox DEN, an easy-to-use platform providing access and visualization tools for data from the Fox Insight study. It also includes a wealth of available data collected from our landmark longitudinal study the Parkinson’s Progression Markers Initiative (PPMI). Additional RNA sequencing data from PPMI is expected to be made available this year. This can be used in concert with PPMI’s robust genetic and clinical data on the same patients to study the pathology and biological mechanisms of Parkinson’s and identify targets for therapeutic development.

Another important part of our data sharing strategy involves collaborative data projects, which leverage combined resources and expertise to expand the relevance and reach of our datasets. MJFF is a member of BRAIN Commons, which brings together cohort data across brain diseases and in-platform analytics tools ranging from data exploration to advanced computing. We are also a partner in the ambitious Accelerating Medicines Partnership Parkinson’s Disease (AMP PD) project with the National Institutes of Health, which plans to open its public data portal this year.

Luba Smolensky, Director of Research Partnerships, who leads many of our data sharing initiatives, says: “Our goal is for qualified researchers — from neurologists and geneticists to statisticians and data scientists — to delve into these data sets. There are many unanswered questions about the causes of Parkinson’s and how best to measure and treat it. We hope these resources will spark new discoveries.”

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