Participant-centric initiatives: Tools to facilitate engagement in research

Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-b...

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Detalles Bibliográficos
Autores principales: Anderson, Nicholas, Bragg, Caleb, Hartzler, Andrea, Edwards, Kelly
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2012
Materias:
Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3998724/
https://www.ncbi.nlm.nih.gov/pubmed/24772384
http://dx.doi.org/10.1016/j.atg.2012.07.001
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author Anderson, Nicholas
Bragg, Caleb
Hartzler, Andrea
Edwards, Kelly
author_facet Anderson, Nicholas
Bragg, Caleb
Hartzler, Andrea
Edwards, Kelly
author_sort Anderson, Nicholas
collection PubMed
description Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.
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spelling pubmed-39987242014-04-24 Participant-centric initiatives: Tools to facilitate engagement in research Anderson, Nicholas Bragg, Caleb Hartzler, Andrea Edwards, Kelly Appl Transl Genom Article Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research. Elsevier 2012-10-03 /pmc/articles/PMC3998724/ /pubmed/24772384 http://dx.doi.org/10.1016/j.atg.2012.07.001 Text en © 2012 Elsevier B.V. http://creativecommons.org/licenses/by-nc-nd/3.0/ This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/3.0/).
spellingShingle Article
Anderson, Nicholas
Bragg, Caleb
Hartzler, Andrea
Edwards, Kelly
Participant-centric initiatives: Tools to facilitate engagement in research
title Participant-centric initiatives: Tools to facilitate engagement in research
title_full Participant-centric initiatives: Tools to facilitate engagement in research
title_fullStr Participant-centric initiatives: Tools to facilitate engagement in research
title_full_unstemmed Participant-centric initiatives: Tools to facilitate engagement in research
title_short Participant-centric initiatives: Tools to facilitate engagement in research
title_sort participant-centric initiatives: tools to facilitate engagement in research
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3998724/
https://www.ncbi.nlm.nih.gov/pubmed/24772384
http://dx.doi.org/10.1016/j.atg.2012.07.001
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