Building a Dataset to Meet the Challenges of Parkinson’s Disease

A platform from The Michael J. Fox Foundation combines patient-reported outcomes and genetic data to meet the challenges of Parkinson's disease.

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Parkinson’s is challenging. People with Parkinson’s have different experiences with the disease—progression rates vary a lot and symptoms change over time and are inconsistent from one patient to the next. This creates issues for clinicians trying to treat patients and researchers trying to develop new treatment options.

In March 2015, The Michael J. Fox Foundation (MJFF) started the Fox Insight study to address some of these challenges. It’s an IRB-approved, online longitudinal study led by principal investigator Caroline Tanner, MD, PhD, of the University of California, San Francisco, and a six-member steering committee. Its goal is to engage a large, diverse population of people in Parkinson’s research to get a more complete picture of the disease, which can then shape research and care.

The Fox Insight study was refined for two years before widespread recruitment began in 2017. Today, the study has more than 44,000 participants. They share information through regularly administered, validated participant-reported outcomes (PRO) and novel Parkinson’s-related questionnaires. The Fox Insight study team painstakingly converted a suite of Parkinson’s clinical assessments and novel questionnaires into digital, participant-friendly forms in order to collect both standard and new information from the population, simultaneously bolstering and expanding Parkinson’s research. We were particularly eager to field new surveys about Parkinson’s and fatigue, on/off medication-related symptoms, and the financial burden of the disease. This new data becomes even more powerful when paired with data from standard Parkinson’s health and environmental questionnaires. Fox Insight also includes genetic data from Parkinson’s patients who opt-in, which is collected in collaboration with 23andMe. So far, 9,518 people with Parkinson’s have added their genetic information to the study.

Collecting useful data was the first step. Making it accessible was the second. Our recently published data descriptor paper in Nature: Scientific Data describes the available data and our platform, the Fox Insight Data Exploration Network (Fox DEN). We knew that we wanted Fox DEN to set a high bar for user experience—easy to learn and quick to get the information you need. We partnered with the Laboratory of NeuroImaging (LONI) at the University of Southern California to help us integrate the three streams of data, secure it, and build the platform. LONI spent 18 months on product development with activities ranging from data profiling, building user journeys aligned with data governance requirements, designing the data and analytics platform, and usability testing. The LONI team integrated clever, fox-related iconography and analytics visuals such as the Fox DEN Venn (an output from the chi-square analysis, pictured below) resulting in an approachable and fun research tool.

Fox DEN Venn

On Fox DEN, it’s easy to perform exploratory analyses across data on health, lifestyle, and genetics. Say you’re designing a trial for a drug to treat anxiety in Parkinson’s, a common symptom. You could use Fox DEN to better understand the common traits of people with Parkinson’s who experience anxiety and inform your participant profile. Or perhaps you’re modeling disease subtypes—you could explore over 2,000 health and lifestyle potential explanatory variables. Since it launched in April 2019, more than 300 researchers have used Fox DEN to run over 560 statistical analyses, download 310 data sets, and visualize 1,000 data points.

New data from the study is added to Fox DEN regularly to facilitate up-to-date Parkinson’s analyses. We’re also committed to updating the platform itself, iterating based on insights from analytics and feedback from the user community. We hope Fox DEN continues to be a useful resource for the Parkinson’s research community and helps shape patient-centric research and care.

Go to the profile of Luba Smolensky

Luba Smolensky

Director, Research Data and Analytics, The Michael J. Fox Foundation for Parkinson’s Research

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