Engaging community stakeholders in research on best practices for clinical genomic sequencing

AIM: Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a d...

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Autores principales: Griesemer, Ida, Staley, Brooke S, Lightfoot, Alexandra F, Bain, Lizzy, Byrd, Derrick, Conway, Carol, Grant, Tracey L, Leach, Barbara, Milko, Laura V, Mollison, Lonna, Porter, Nadiah, Reid, Sharron, Smith, Gerri, Waltz, Margaret, Berg, Jonathan S, Rini, Christine, O’Daniel, Julianne M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2020
Materias:
Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938705/
https://www.ncbi.nlm.nih.gov/pubmed/33026293
http://dx.doi.org/10.2217/pme-2020-0074
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author Griesemer, Ida
Staley, Brooke S
Lightfoot, Alexandra F
Bain, Lizzy
Byrd, Derrick
Conway, Carol
Grant, Tracey L
Leach, Barbara
Milko, Laura V
Mollison, Lonna
Porter, Nadiah
Reid, Sharron
Smith, Gerri
Waltz, Margaret
Berg, Jonathan S
Rini, Christine
O’Daniel, Julianne M
author_facet Griesemer, Ida
Staley, Brooke S
Lightfoot, Alexandra F
Bain, Lizzy
Byrd, Derrick
Conway, Carol
Grant, Tracey L
Leach, Barbara
Milko, Laura V
Mollison, Lonna
Porter, Nadiah
Reid, Sharron
Smith, Gerri
Waltz, Margaret
Berg, Jonathan S
Rini, Christine
O’Daniel, Julianne M
author_sort Griesemer, Ida
collection PubMed
description AIM: Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study. METHODS: A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed. RESULTS: Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population. DISCUSSION: This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants.
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spelling pubmed-79387052021-03-08 Engaging community stakeholders in research on best practices for clinical genomic sequencing Griesemer, Ida Staley, Brooke S Lightfoot, Alexandra F Bain, Lizzy Byrd, Derrick Conway, Carol Grant, Tracey L Leach, Barbara Milko, Laura V Mollison, Lonna Porter, Nadiah Reid, Sharron Smith, Gerri Waltz, Margaret Berg, Jonathan S Rini, Christine O’Daniel, Julianne M Per Med Article AIM: Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study. METHODS: A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed. RESULTS: Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population. DISCUSSION: This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants. 2020-10-07 2020-11 /pmc/articles/PMC7938705/ /pubmed/33026293 http://dx.doi.org/10.2217/pme-2020-0074 Text en This work is licensed under the Attribution-NonCommercial-NoDerivatives 4.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/
spellingShingle Article
Griesemer, Ida
Staley, Brooke S
Lightfoot, Alexandra F
Bain, Lizzy
Byrd, Derrick
Conway, Carol
Grant, Tracey L
Leach, Barbara
Milko, Laura V
Mollison, Lonna
Porter, Nadiah
Reid, Sharron
Smith, Gerri
Waltz, Margaret
Berg, Jonathan S
Rini, Christine
O’Daniel, Julianne M
Engaging community stakeholders in research on best practices for clinical genomic sequencing
title Engaging community stakeholders in research on best practices for clinical genomic sequencing
title_full Engaging community stakeholders in research on best practices for clinical genomic sequencing
title_fullStr Engaging community stakeholders in research on best practices for clinical genomic sequencing
title_full_unstemmed Engaging community stakeholders in research on best practices for clinical genomic sequencing
title_short Engaging community stakeholders in research on best practices for clinical genomic sequencing
title_sort engaging community stakeholders in research on best practices for clinical genomic sequencing
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938705/
https://www.ncbi.nlm.nih.gov/pubmed/33026293
http://dx.doi.org/10.2217/pme-2020-0074
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