Open Access
Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience
Author(s) -
Roseanne D. Dobkin,
Ninad Amondikar,
Catherine Kopil,
Chelsea CaspellGarcia,
Ethan Brown,
Lana M. Chahine,
Connie Marras,
Nabila Dahodwala,
Sneha Mantri,
David Standaert,
Marissa Dean,
Ira Shoulson,
Kenneth Marek,
Andrea Katz,
Monica Korell,
Lindsey Riley,
Caroline M. Tanner,
Fox Insight Study
Publication year - 2020
Publication title -
journal of parkinson's disease/journal of parkinson's disease (online)
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.747
H-Index - 45
eISSN - 1877-718X
pISSN - 1877-7171
DOI - 10.3233/jpd-191901
Subject(s) - diversity (politics) , cohort , parkinson's disease , disease , gerontology , cohort study , political science , psychology , medicine , law
Background: Clinical research in Parkinson’s disease (PD) faces practical and ethical challenges due to two interrelated problems: participant under-recruitment and lack of diversity. Fox Insight (FI) is a web-based longitudinal study collecting patient-reported outcomes and genetic data worldwide to inform therapeutic studies. FI’s online platform provides an opportunity to evaluate online strategies for recruiting large, diverse research cohorts. Objective: This project aimed to determine 1) whether FI’s digital marketing was associated with increased enrollment overall and from under-represented patient groups, compared to traditional recruitment methods; 2) the clinical and demographic characteristics of samples recruited online, and 3) the cost of this online recruitment. Method: FI recruitment during a 6-week baseline period without digital promotion was compared to recruitment during several periods of digital outreach. Separate online recruiting intervals included general online study promotion and unique Facebook and Google ad campaigns targeting under-represented subgroups: early PD, late/advanced PD, and residents of underrepresented/rural geographic areas. Results: Early PD, late PD, and geotargeting campaigns enrolled more individuals in their respective cohorts compared to baseline. All online campaigns also yielded greater total FI enrollment, attracting more participants who were non-White, Hispanic, older, female, and had lower educational attainment and income, and more medical comorbidities. Cost per new participant ranged from $21 (Facebook) to $108 (Google). Conclusion: Digital marketing may allow researchers to increase, accelerate, and diversify recruitment for PD clinical studies, by tailoring digital ads to target PD cohort characteristics.