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Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience

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 t...

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Autores principales: Dobkin, Roseanne D., Amondikar, Ninad, Kopil, Catherine, Caspell-Garcia, Chelsea, Brown, Ethan, Chahine, Lana M., Marras, Connie, Dahodwala, Nabila, Mantri, Sneha, Standaert, David G., Dean, Marissa, Shoulson, Ira, Marek, Kenneth, Katz, Andrea, Korell, Monica, Riley, Lindsey, Tanner, Caroline M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: IOS Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7242847/
https://www.ncbi.nlm.nih.gov/pubmed/32250321
http://dx.doi.org/10.3233/JPD-191901
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author Dobkin, Roseanne D.
Amondikar, Ninad
Kopil, Catherine
Caspell-Garcia, Chelsea
Brown, Ethan
Chahine, Lana M.
Marras, Connie
Dahodwala, Nabila
Mantri, Sneha
Standaert, David G.
Dean, Marissa
Shoulson, Ira
Marek, Kenneth
Katz, Andrea
Korell, Monica
Riley, Lindsey
Tanner, Caroline M.
author_facet Dobkin, Roseanne D.
Amondikar, Ninad
Kopil, Catherine
Caspell-Garcia, Chelsea
Brown, Ethan
Chahine, Lana M.
Marras, Connie
Dahodwala, Nabila
Mantri, Sneha
Standaert, David G.
Dean, Marissa
Shoulson, Ira
Marek, Kenneth
Katz, Andrea
Korell, Monica
Riley, Lindsey
Tanner, Caroline M.
author_sort Dobkin, Roseanne D.
collection PubMed
description 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.
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spelling pubmed-72428472020-05-27 Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience Dobkin, Roseanne D. Amondikar, Ninad Kopil, Catherine Caspell-Garcia, Chelsea Brown, Ethan Chahine, Lana M. Marras, Connie Dahodwala, Nabila Mantri, Sneha Standaert, David G. Dean, Marissa Shoulson, Ira Marek, Kenneth Katz, Andrea Korell, Monica Riley, Lindsey Tanner, Caroline M. J Parkinsons Dis Research Report 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. IOS Press 2020-04-03 /pmc/articles/PMC7242847/ /pubmed/32250321 http://dx.doi.org/10.3233/JPD-191901 Text en © 2020 – IOS Press and the authors. All rights reserved https://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution (CC BY 4.0) License (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Research Report
Dobkin, Roseanne D.
Amondikar, Ninad
Kopil, Catherine
Caspell-Garcia, Chelsea
Brown, Ethan
Chahine, Lana M.
Marras, Connie
Dahodwala, Nabila
Mantri, Sneha
Standaert, David G.
Dean, Marissa
Shoulson, Ira
Marek, Kenneth
Katz, Andrea
Korell, Monica
Riley, Lindsey
Tanner, Caroline M.
Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience
title Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience
title_full Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience
title_fullStr Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience
title_full_unstemmed Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience
title_short Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson’s Disease Research: The Fox Insight Cohort Experience
title_sort innovative recruitment strategies to increase diversity of participation in parkinson’s disease research: the fox insight cohort experience
topic Research Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7242847/
https://www.ncbi.nlm.nih.gov/pubmed/32250321
http://dx.doi.org/10.3233/JPD-191901
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