Fox Insight online cohort

The research record

This is the project's file for this landmark, as written and checked. Sources are listed at the end; anything not yet confirmed is marked "Not yet verified".

Who

The Michael J. Fox Foundation (landmark 77), which sponsors and pays for the study; the principal investigator is Caroline Tanner (UCSF). The personal-genetics company 23andMe supplied genetic testing for patients who chose it. Data descriptor: Luba Smolensky (Foundation staff) and 50 co-authors including Tanner and the 23andMe Research Team (Scientific Data, 2020).

What happened

Fox Insight is open to anyone aged 18 or over who speaks English, with or without Parkinson's. Participants fill in online questionnaires on health, symptoms and daily activities at regular intervals, plus one-off surveys on environmental exposures and healthcare preferences. People with Parkinson's can choose to share genetic data through 23andMe at no cost, with free genetic counselling.

• Dates. The Foundation says it launched in beta in March 2015 and formally debuted in October 2017. A Foundation article dated 31 October 2018 says it began "one year ago". This file uses 2017 as the start.
• Growth. Enrolment rose from about 6,500 to over 27,000 in the first year. The 2020 paper set a target of at least 125,000 people. The Foundation's data page now says "nearly 54,000 participants and growing" (undated page).
• Data access. Qualified researchers can download the questionnaire data and Parkinson's-related genetic variants through the Foundation's Fox DEN platform. The full genetic set (about 600,000 variants) needs a separate request and ethics review.

Why it moved us toward a cure

Recruitment is the slowest step in most trials. An online cohort can recruit across a country, and its members can be contacted for trials or sub-studies. The questionnaire-plus-genes combination also supports studies of environment and risk, alongside the pooled genetic work in landmark 78.

Outcome

Advanced as a research resource; it is still enrolling and being used. Its data are self-reported, not clinic-verified, and online cohorts tend to favour people who are comfortable with computers (a general limit; the paper's own discussion was not read). No correction or retraction of the data descriptor was found.

Sources

• Smolensky et al., Sci Data 2020;7:67, DOI 10.1038/s41597-020-0401-2, PMID 32094335 (abstract and acknowledgements via Europe PMC, PMC7039948)
• Michael J. Fox Foundation: Fox Insight (beta March 2015, formal debut October 2017; sponsor and principal investigator) · Fox Insight data page (nearly 54,000 participants)
• Michael J. Fox Foundation: one year later (31 Oct 2018) (enrolment; 23andMe offer)
• Not yet verified: counts of people with Parkinson's versus controls; whether the 23andMe arrangement continues after 23andMe's 2025 change of ownership (not searched).