Comparison of an Online-Only Parkinson's Disease Research Cohort to Cohorts Assessed in Person

Lana M. Chahine, Iris Chin, Chelsea Caspell-Garcia, David G. Standaert, Ethan Brown, Luba Smolensky, Vanessa Arnedo, Daisy Daeschler, Lindsey Riley, Monica Korell, Roseanne Dobkin, Ninad Amondikar, Stephen Gradinscak, Ira Shoulson, Marissa Dean, Kevin Kwok, Paul Cannon, Kenneth Marek, Catherine Kopil, Caroline M. TannerConnie Marrason

Research output: Contribution to journalArticlepeer-review

11 Scopus citations


Background: Online tools for data collection could be of value in patient-oriented research. The Fox Insight (FI) study collects data online from individuals with self-reported Parkinson's disease (PD). Comparing the FI cohort to other cohorts assessed through more traditional (in-person) observational research studies would inform the representativeness and utility of FI data. Objective: To compare self-reported demographic characteristics, symptoms, medical history, and PD medication use of the FI PD cohort to other recent observational research study cohorts assessed with in-person visits. Methods: The FI PD cohort (n = 12,654) was compared to 3 other cohorts, selected based on data accessibility and breadth of assessments: Parkinson's Progression Markers Initiative (PPMI; PD n = 422), Parkinson's Disease Biomarker Program (PDBP; n = 700), and PD participants in the LRRK2 consortium without LRRK2 mutations (n = 508). Demographics, motor and non-motor assessments, and medications were compared across cohorts. Where available, identical items on surveys and assessments were compared; otherwise, expert opinion was used to determine comparable definitions for a given variable. Results: The proportion of females was significantly higher in FI (45.56%) compared to PPMI (34.36%) and PDBP (35.71%). The FI cohort had greater educational attainment as compared to all other cohorts. Overall, prevalence of difficulties with motor experiences of daily living and non-motor symptoms in the FI cohort was similar to other cohorts, with only a few significant differences that were generally small in magnitude. Missing data were rare for the FI cohort, except on a few variables. Discussion: Patterns of responses to patient-reported assessments obtained online on the PD cohort of the FI study were similar to PD cohorts assessed in-person.

Original languageEnglish (US)
Pages (from-to)677-691
Number of pages15
JournalJournal of Parkinson's Disease
Issue number2
StatePublished - 2020

All Science Journal Classification (ASJC) codes

  • Clinical Neurology
  • Cellular and Molecular Neuroscience


  • Parkinson's disease
  • observational studies as topic
  • patient reported outcome measures
  • survey methods


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