Abstract
Fox Insight is an online, longitudinal health study of people with and without Parkinson’s disease with targeted enrollment set to at least 125,000 individuals. Fox Insight data is a rich data set facilitating discovery, validation, and reproducibility in Parkinson’s disease research. The dataset is generated through routine longitudinal assessments (health and medical questionnaires evaluated at regular cycles), one-time questionnaires about environmental exposure and healthcare preferences, and genetic data collection. Qualified Researchers can explore, analyze, and download patient-reported outcomes (PROs) data and Parkinson’s disease- related genetic variants at https://foxden.michaeljfox.org. The full Fox Insight genetic data set, including approximately 600,000 single nucleotide polymorphisms (SNPs), can be requested separately with institutional review and are described outside of this data descriptor.
Highlights
Background & SummaryParkinson’s disease (PD) is the second most common neurodegenerative disease, with prevalence expected to increase over time[1,2]
Within Fox Insight, 6.9% of participants are genotyped on the V3 platform which is based on the Illumina OmniExpress + BeadChip and contains a total of about 950,000 SNPs, 12.7% of participants are genotyped on the V4 platform which is a fully custom array of about 570,000 SNPs, and 80.4% of participants are genotyped on the V5 platform which is in current use and is a customized Illumina Infinium Global Screening Array of about 690,000 SNPs
16% of total participants (N = 4,697) are part of Fox Insight’s beta group, defined as those joining before the March 2017 soft launch of Fox Insight
Summary
Parkinson’s disease (PD) is the second most common neurodegenerative disease, with prevalence expected to increase over time[1,2]. In particular, has helped to support a narrowing of the digital divide across several racial, ethnic, geographic, and age groups[7,8,9] Internet usage among those over 65, the population most likely to develop Parkinson’s disease, has risen substantially in the last several years, with 67% reporting regular internet usage[10]. Fox Insight is an online study consisting of regularly-administered questionnaires collected longitudinally over several years, the data from which can be used to improve understanding of participant lived experience and complement PROs with Parkinson’s disease genetic risks and modifiers[15]. Fox Insight can support modifications to multi-modal data collection in alignment with evolutions in Parkinson’s disease research. This flexibility is enabled by Fox Insight’s infrastructure, an agile-developed web application, built through a software development framework that emphasizes phased deployment, that manages enrollment, e-consent, and a collection of routine longitudinal assessments[17]
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