Dataset Information

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

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.

SUBMITTER: Chahine LM

PROVIDER: S-EPMC7242834 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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

Chahine Lana M LM Chin Iris I Caspell-Garcia Chelsea C Standaert David G DG Brown Ethan E Smolensky Luba L Arnedo Vanessa V Daeschler Daisy D Riley Lindsey L Korell Monica M Dobkin Roseanne R Amondikar Ninad N Gradinscak Stephen S Shoulson Ira I Dean Marissa M Kwok Kevin K Cannon Paul P Marek Kenneth K Kopil Catherine C Tanner Caroline M CM Marras Connie C

Journal of Parkinson's disease 20200101 2

<h4>Background</h4>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.<h4>Objective</h4>To compare self-reported demographic characteristics, symptoms, medical history, and PD medicat ...[more]

PMID: 31958097

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Project description:BackgroundDue to racial, cultural, and linguistic marginalization, some populations experience disproportionate barriers to genetic testing in both clinical and research settings. It is difficult to track such disparities due to non-inclusive self-reported race and ethnicity categories within the electronic health record (EHR). Inclusion and access for all populations is critical to achieve health equity and to capture the full spectrum of rare genetic disease.ObjectiveWe aimed to create revised race and ethnicity categories. Additionally, we identified racial and ethnic under-representation amongst three cohorts: (1) the general Boston Children's Hospital patient population (general BCH), (2) the BCH patient population that underwent clinical genomic testing (clinical sequencing), and (3) Children's Rare Disease Cohort (CRDC) research initiative participants.Design and methodsRace and ethnicity data were collected from the EHRs of the general BCH, clinical sequencing, and CRDC cohorts. We constructed a single comprehensive set of race and ethnicity categories. EHR-based race and ethnicity variables were mapped within each cohort to the revised categories. Then, the numbers of patients within each revised race and ethnicity category were compared across cohorts.ResultsThere was a significantly lower percentage of Black or African American/African, non-Hispanic/non-Latine individuals in the CRDC cohort compared with the general BCH cohort, but there was no statistically significant difference between the CRDC and the clinical sequencing cohorts. There was a significantly lower percentage of multi-racial, Hispanic/Latine individuals in the CRDC cohort than the clinical sequencing cohort. White, non-Hispanic/non-Latine individuals were over-represented in the CRDC compared to the two other groups.ConclusionWe highlight underrepresentation of certain racial and ethnic populations in sequencing cohorts compared to the general hospital population. We propose a range of measures to address these disparities, to strive for equitable future precision medicine-based clinical care and for the benefit of the whole rare disease community.

Dataset Information

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

Publications

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

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