1. Engaging community stakeholders in research on best practices for clinical genomic sequencing
- Author
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Sharron Reid, Gerri Smith, Margaret Waltz, Tracey L. Grant, Lonna Mollison, Ida Griesemer, Carol Conway, Julianne M. O’Daniel, Lizzy Bain, Christine Rini, Brooke S Staley, Laura V. Milko, Derrick Byrd, Barbara Leach, Jonathan S. Berg, Nadiah Porter, and Alexandra F. Lightfoot
- Subjects
Adult ,Male ,Proteomics ,Best practice ,precision medicine ,Context (language use) ,underserved populations ,community engagement ,Article ,Stakeholder Participation ,Humans ,genetics ,Child ,health equity ,Pharmacology ,Medical education ,community–academic partnerships ,Community engagement ,Whole Genome Sequencing ,diagnostic odyssey ,Equity (finance) ,Health services research ,Chromosome Mapping ,clinical trial ,General Medicine ,Genomics ,Middle Aged ,Precision medicine ,Health equity ,health services research ,Clinical trial ,Benchmarking ,genomic sequencing ,Practice Guidelines as Topic ,Molecular Medicine ,Female ,Public Health ,Psychology - Abstract
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.
- Published
- 2020