Fox Insight at 5 years - a cohort of 54,000 participants contributing longitudinal patient-reported outcome, genetic, and microbiome data relating to Parkinson’s disease

Abstract

Abstract Fox Insight is an online, longitudinal study of over 54,000 people with and without Parkinson’s disease, facilitating discovery, validation, and reproducibility in Parkinson’s disease research. The study administers routine longitudinal assessments, one-time questionnaires on an array of topics such as environmental exposure or COVID-19, plus genetic and microbiome data collection. Researchers can explore and download patient-reported outcomes data and Parkinson’s disease related genetic variants upon completing a Data Use Agreement. The full genetic data set, including approximately 650,000 single nucleotide polymorphisms for over 10,000 participants, and the microbiome data set for over 650 participants, can be requested with a heightened level of access. Since the first Fox Insight data descriptor was published in 2020, the data captured has been extended significantly, so this paper supersedes the previous one. Since then, the number of participants has increased by more than 20,000; an additional 1,747,729 surveys were completed; 130 gigabytes of genetic data were released; responses from 16 new one-time surveys were collected; and, data from one additional sub-study was made available.