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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; Mollison, Lonna; Porter, Nadiah; Reid, Sharron; Smith, Gerri; Waltz, Margaret; Berg, Jonathan S; Rini, Christine; O'Daniel, Julianne M.
Afiliação
  • Griesemer I; Department of Health Behavior, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Staley BS; Cecil G. Sheps Center for Health Services Research, UNC Chapel Hill, Chapel Hill NC, USA.
  • Lightfoot AF; Department of Epidemiology, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Bain L; Department of Health Behavior, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Byrd D; Center for Health Promotion & Disease Prevention, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Conway C; Parent/Advocate, Knightdale, NC, USA.
  • Grant TL; Parent/Advocate, Family Resource Center South Atlantic, Raleigh, NC, USA.
  • Leach B; Parent/Advocate, Parent Advocates for Adult Children with Intellectual &/or Developmental Disabilities in NC, Chapel Hill, NC, USA.
  • Milko L; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Mollison L; Parent/Advocate, Family Support Program, School of Social Work, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Porter N; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Reid S; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA.
  • Smith G; Parent/Advocate, Durham, NC, USA.
  • Waltz M; Parent/Advocate, Wake County Sickle Cell Support Group, Raleigh, NC, USA.
  • Berg JS; Parent/Advocate, Holly Springs, NC, USA.
  • Rini C; Department of Social Medicine, UNC Chapel Hill, Chapel Hill, NC, USA.
  • O'Daniel JM; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA.
Per Med ; 17(6): 435-444, 2020 11.
Article em En | MEDLINE | ID: mdl-33026293
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.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Saúde Pública / Genômica / Participação dos Interessados Tipo de estudo: Guideline / Qualitative_research Limite: Adult / Child / Female / Humans / Male / Middle aged Idioma: En Revista: Per Med Ano de publicação: 2020 Tipo de documento: Article País de afiliação: Estados Unidos
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Saúde Pública / Genômica / Participação dos Interessados Tipo de estudo: Guideline / Qualitative_research Limite: Adult / Child / Female / Humans / Male / Middle aged Idioma: En Revista: Per Med Ano de publicação: 2020 Tipo de documento: Article País de afiliação: Estados Unidos