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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Detalles Bibliográficos
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
Descripción
Sumario: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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