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

  • Author(s): Chahine, Lana M;
  • Chin, Iris;
  • Caspell-Garcia, Chelsea;
  • Standaert, David G;
  • Brown, Ethan;
  • Smolensky, Luba;
  • Arnedo, Vanessa;
  • Daeschler, Daisy;
  • Riley, Lindsey;
  • Korell, Monica;
  • Dobkin, Roseanne;
  • Amondikar, Ninad;
  • Gradinscak, Stephen;
  • Shoulson, Ira;
  • Dean, Marissa;
  • Kwok, Kevin;
  • Cannon, Paul;
  • Marek, Kenneth;
  • Kopil, Catherine;
  • Tanner, Caroline M;
  • Marras, Connie;
  • Fox Insight Study
  • et al.
Abstract

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.

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