TY - JOUR
T1 - Comparison of an Online-Only Parkinson's Disease Research Cohort to Cohorts Assessed in Person
AU - Chahine, Lana M.
AU - Chin, Iris
AU - Caspell-Garcia, Chelsea
AU - Standaert, David G.
AU - Brown, Ethan
AU - Smolensky, Luba
AU - Arnedo, Vanessa
AU - Daeschler, Daisy
AU - Riley, Lindsey
AU - Korell, Monica
AU - Dobkin, Roseanne
AU - Amondikar, Ninad
AU - Gradinscak, Stephen
AU - Shoulson, Ira
AU - Dean, Marissa
AU - Kwok, Kevin
AU - Cannon, Paul
AU - Marek, Kenneth
AU - Kopil, Catherine
AU - Tanner, Caroline M.
AU - Marrason, Connie
N1 - Funding Information:
The Fox Insight Study is funded by The Michael J. Fox Foundation for Parkinson’s Research. We would like to thank the Parkinson’s community for participating in this study to make this research possible.
Publisher Copyright:
© 2020-IOS Press and the authors. All rights reserved.
PY - 2020
Y1 - 2020
N2 - 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.
AB - 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.
KW - Parkinson's disease
KW - observational studies as topic
KW - patient reported outcome measures
KW - survey methods
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U2 - 10.3233/JPD-191808
DO - 10.3233/JPD-191808
M3 - Article
C2 - 31958097
AN - SCOPUS:85082315184
SN - 1877-7171
VL - 10
SP - 677
EP - 691
JO - Journal of Parkinson's Disease
JF - Journal of Parkinson's Disease
IS - 2
ER -