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. 2012 Dec 1:1:25-29.
doi: 10.1016/j.atg.2012.07.001.

Participant-Centric Initiatives: Tools to Facilitate Engagement In Research

Nicholas Anderson  1 , Caleb Bragg  2 , Andrea Hartzler  3 , Kelly Edwards  4
Affiliations

Participant-Centric Initiatives: Tools to Facilitate Engagement In Research

Nicholas Anderson et al. Appl Transl Genom. .

Abstract

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.

Keywords: applied research; ethical and social issues; participant engagement; research communication; software tools.

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Figures

Fig. 1
Fig. 1
Example of modes of engagement and communication for patient centric initiatives.
See this image and copyright information in PMC

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