학술논문
Comparison of an Online-Only Parkinson's Disease Research Cohort to Cohorts Assessed In Person.
Document Type
article
Author
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; Marrason, Connie; behalf of the Fox Insight Study
Source
Journal of Parkinson's disease. 10(2)
Subject
Language
Abstract
BackgroundOnline 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.ObjectiveTo 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.MethodsThe 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.ResultsThe 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.DiscussionPatterns of responses to patient-reported assessments obtained online on the PD cohort of the FI study were similar to PD cohorts assessed in-person.