Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research

Alzheimer's disease (AD) research is at a critical time. The global society is increasingly aware of the frightening rate of growth of the human and financial burden caused by this condition and of the urgent need to halt its progression. Consequently, the scientific community holds great respo...

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Autores: Boada, Mercè, Santos Santos, Miguel A., Rodríguez Gómez, Octavio, Alegret, Montserrat, Canabate, Pilar, Lafuente, Asunción, Abdelnour, Carla, Buendia, Mar, Dios, María José de, Morera, América, Sanabria, Ángela, Campo, Laura, Ruiz, Agustín, Tárraga, Lluís
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2018
País:España
Institución:Universidad de Barcelona
Repositorio:Dipòsit Digital de la UB
OAI Identifier:oai:diposit.ub.edu:2445/172705
Acceso en línea:https://hdl.handle.net/2445/172705
Access Level:acceso abierto
Palabra clave:Malaltia d'Alzheimer
Assaigs clínics
Alzheimer's disease
Clinical trials
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spelling Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease ResearchBoada, MercèSantos Santos, Miguel A.Rodríguez Gómez, OctavioAlegret, MontserratCanabate, PilarLafuente, AsunciónAbdelnour, CarlaBuendia, MarDios, María José deMorera, AméricaSanabria, ÁngelaCampo, LauraRuiz, AgustínTárraga, LluísMalaltia d'AlzheimerAssaigs clínicsAlzheimer's diseaseClinical trialsAlzheimer's disease (AD) research is at a critical time. The global society is increasingly aware of the frightening rate of growth of the human and financial burden caused by this condition and of the urgent need to halt its progression. Consequently, the scientific community holds great responsibility to quickly put in place and optimize the machinery necessary for testing newtreatments or interventions. In this context demand for participants forADresearch is at an all-time high. In this review, we will focus on a methodological factor that is increasingly recognized as a key factor that shapes trial populations and affects validity of results in clinical trials: patient engagement, recruitment, and retention. We outline specific problems relevant to patient engagement in AD including recruiting enough participants, difficulties in participant retention, ensuring the recruited sample is representative of the general AD population, the burden of screening failures, and new challenges related to recruiting in preclinical disease. To address the urgent need for more research studying the applicability and cost-effectiveness of different recruitment strategies across different settings and nationalities, we describe the Models of Patient Engagement for Alzheimer's Disease (MOPEAD) project, a public-private partnership promoted by the Innovative Medicine Initiative (IMI), which will provide a large multinational quantitative analysis comparing different innovative recruitment models. We also discuss strategies that address each problem and draw on the experience of Fundacio Ace to argue that focusing resources on comprehensive AD centers that offer coordinated clinical and social care and participate in basic and clinical research, is an effective and efficient way of implementing many of the discussed strategies.Ios Press2018info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://hdl.handle.net/2445/172705Articles publicats en revistes (Institut d'lnvestigació Biomèdica de Bellvitge (IDIBELL))reponame:Dipòsit Digital de la UBinstname:Universidad de BarcelonaInglésReproducció del document publicat a: https://doi.org/10.3233/JAD-170866Journal Of Alzheimers Disease, 2018-01-01, Vol. 62, Issue 3, P. 1079-1090https://doi.org/10.3233/JAD-170866cc by-nc (c) Boada, Mercè et al., 2018http://creativecommons.org/licenses/by-nc/3.0/es/info:eu-repo/semantics/openAccessoai:diposit.ub.edu:2445/1727052026-05-27T06:46:51Z
dc.title.none.fl_str_mv Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
title Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
spellingShingle Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
Boada, Mercè
Malaltia d'Alzheimer
Assaigs clínics
Alzheimer's disease
Clinical trials
title_short Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
title_full Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
title_fullStr Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
title_full_unstemmed Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
title_sort Patient Engagement: The Fundacio ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research
dc.creator.none.fl_str_mv Boada, Mercè
Santos Santos, Miguel A.
Rodríguez Gómez, Octavio
Alegret, Montserrat
Canabate, Pilar
Lafuente, Asunción
Abdelnour, Carla
Buendia, Mar
Dios, María José de
Morera, América
Sanabria, Ángela
Campo, Laura
Ruiz, Agustín
Tárraga, Lluís
author Boada, Mercè
author_facet Boada, Mercè
Santos Santos, Miguel A.
Rodríguez Gómez, Octavio
Alegret, Montserrat
Canabate, Pilar
Lafuente, Asunción
Abdelnour, Carla
Buendia, Mar
Dios, María José de
Morera, América
Sanabria, Ángela
Campo, Laura
Ruiz, Agustín
Tárraga, Lluís
author_role author
author2 Santos Santos, Miguel A.
Rodríguez Gómez, Octavio
Alegret, Montserrat
Canabate, Pilar
Lafuente, Asunción
Abdelnour, Carla
Buendia, Mar
Dios, María José de
Morera, América
Sanabria, Ángela
Campo, Laura
Ruiz, Agustín
Tárraga, Lluís
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Malaltia d'Alzheimer
Assaigs clínics
Alzheimer's disease
Clinical trials
topic Malaltia d'Alzheimer
Assaigs clínics
Alzheimer's disease
Clinical trials
description Alzheimer's disease (AD) research is at a critical time. The global society is increasingly aware of the frightening rate of growth of the human and financial burden caused by this condition and of the urgent need to halt its progression. Consequently, the scientific community holds great responsibility to quickly put in place and optimize the machinery necessary for testing newtreatments or interventions. In this context demand for participants forADresearch is at an all-time high. In this review, we will focus on a methodological factor that is increasingly recognized as a key factor that shapes trial populations and affects validity of results in clinical trials: patient engagement, recruitment, and retention. We outline specific problems relevant to patient engagement in AD including recruiting enough participants, difficulties in participant retention, ensuring the recruited sample is representative of the general AD population, the burden of screening failures, and new challenges related to recruiting in preclinical disease. To address the urgent need for more research studying the applicability and cost-effectiveness of different recruitment strategies across different settings and nationalities, we describe the Models of Patient Engagement for Alzheimer's Disease (MOPEAD) project, a public-private partnership promoted by the Innovative Medicine Initiative (IMI), which will provide a large multinational quantitative analysis comparing different innovative recruitment models. We also discuss strategies that address each problem and draw on the experience of Fundacio Ace to argue that focusing resources on comprehensive AD centers that offer coordinated clinical and social care and participate in basic and clinical research, is an effective and efficient way of implementing many of the discussed strategies.
publishDate 2018
dc.date.none.fl_str_mv 2018
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/2445/172705
url https://hdl.handle.net/2445/172705
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Reproducció del document publicat a: https://doi.org/10.3233/JAD-170866
Journal Of Alzheimers Disease, 2018-01-01, Vol. 62, Issue 3, P. 1079-1090
https://doi.org/10.3233/JAD-170866
dc.rights.none.fl_str_mv cc by-nc (c) Boada, Mercè et al., 2018
http://creativecommons.org/licenses/by-nc/3.0/es/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv cc by-nc (c) Boada, Mercè et al., 2018
http://creativecommons.org/licenses/by-nc/3.0/es/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Ios Press
publisher.none.fl_str_mv Ios Press
dc.source.none.fl_str_mv Articles publicats en revistes (Institut d'lnvestigació Biomèdica de Bellvitge (IDIBELL))
reponame:Dipòsit Digital de la UB
instname:Universidad de Barcelona
instname_str Universidad de Barcelona
reponame_str Dipòsit Digital de la UB
collection Dipòsit Digital de la UB
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15,301629

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