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

People with Parkinson’s can experience variable symptoms over the course of the disease, have different 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 the disease.

A new paper published today in Scientific Data, a journal from Nature Research, explains how The Michael J. Fox Foundation (MJFF) and 23andMe are tackling this gap in understanding. 

Data Available for Researchers

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 the foxinsight.org. De-identified data from Fox Insight is available to qualified researchers through the Fox DEN platform.

“In this new data descriptor paper, we explain what is available, how it was collected, and from whom,” said Luba Smolensky, MJFF’s Director of Research Data and Analytics and the lead author of the study. “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.”

Types of Data

Fox Insight integrates three types of data: 

  • demographics and patient-reported outcomes from validated instruments assessed at routine intervals, 
  • information from one-time surveys on Parkinson’s-related issues such as economic burden and use of complementary therapies
  • genetic data collected through 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. 

23andMe researchers see the potential that this rich collection of data offers to better understand the factors that influence Parkinson’s disease progression among different patients, and, in turn, drive insight into new disease-modifying therapies.  

“The data offers new opportunities to gain important insights into Parkinson’s disease,” said 23andMe’s Parkinson’s disease program manager, Paul Cannon, Ph.D. “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 Fox Insight 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.

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