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Behind-the-Scenes of the Largest Dataset of Parkinson’s Patient-Reported Outcomes

Fox DEN venn diagram -- a data and analytics resource for the research community.

Fox DEN venn diagram -- a data and analytics resource for the research community.

A new paper in Nature: Scientific Data explains how we're using data to meet some of the most pressing challenges in Parkinson's disease.

People with Parkinson’s can experience variable symptoms over the course of the disease, have differing responses to treatment, and often progress at distinct rates. Traditional in-person clinical studies don’t include a diverse range of patients, limiting our understanding of this disease. A new paper published today in Nature: Scientific Data explains how The Michael J. Fox Foundation (MJFF) and 23andMe are tackling this gap in understanding.

The paper outlines the data being collected through Fox Insight, an online longitudinal study of people with and without Parkinson’s disease sponsored by MJFF. It’s the largest study of patient-reported outcomes in Parkinson’s, with more than 44,000 current participants and plans to recruit thousands more. Interested volunteers can learn more on De-identified data from Fox Insight is available to qualified researchers through the Fox DEN platform.

Author Luba Smolensky, Director of Research Data and Analytics at MJFF, says: “In this new data descriptor paper, we explain what is available, how it was collected, and from whom. The patient-reported outcomes in this dataset are critical to the advancement of new Parkinson’s therapies, and we want the research community to understand and use this important resource.”

Fox Insight integrates three types of data: (1) demographics and patient-reported outcomes from validated instruments assessed at routine intervals, (2) information from one-time surveys on Parkinson’s-related issues such as economic burden and use of complementary therapies, and (3) genetic data collected through a collaboration with 23andMe. Both the content and timing of questionnaires are dependent on participant self-reported diagnosis. Fox Insight was also designed to support adjustments to multi-modal data collection as Parkinson’s research evolves.

“The data offers new opportunities to gain important insights into Parkinson’s disease,” said 23andMe’s Parkinson’s disease program manager, Paul Cannon, PhD. “Because MJFF is making this data available to other qualified researchers through the Fox Den platform, it enables the research community  to accelerate the pace of this important research and better understand the unique patient experience, and that is at the core of our mission.”

The goal of the study is to provide Parkinson’s researchers with a rich dataset combining patient experiences with genetic risks and modifiers that can be used for discovery, validation and reproducibility. Qualified researchers are invited to explore and analyze the data through the study’s data platform, Fox DEN. In an accompanying Behind the Paper blog on Nature, Luba Smolensky writes: “We hope Fox DEN continues to be a useful resource for the Parkinson’s research community and helps shape patient-centric research and care.”

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