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

被引：9

作者：

Griesemer, Ida ^{[1
,2
]}

Staley, Brooke S. ^{[3
]}

Lightfoot, Alexandra F. ^{[1
,4
]}

Bain, Lizzy

Byrd, Derrick ^{[5
]}

Conway, Carol ^{[6
]}

Grant, Tracey L. ^{[7
]}

Leach, Barbara ^{[8
]}

Milko, Laura ^{[7
]}

Mollison, Lonna ^{[7
]}

Porter, Nadiah

Reid, Sharron ^{[9
]}

Smith, Gerri

Waltz, Margaret ^{[10
]}

Berg, Jonathan S. ^{[7
]}

Rini, Christine ^{[11
,12
]}

O'Daniel, Julianne M. ^{[7
]}

机构：

[1] Univ N Carolina, Dept Hlth Behav, Chapel Hill, NC 27599 USA

[2] Univ N Carolina, Cecil G Sheps Ctr Hlth Serv Res, Chapel Hill, NC 27599 USA

[3] Univ N Carolina, Dept Epidemiol, Chapel Hill, NC USA

[4] Univ N Carolina, Ctr Hlth Promot & Dis Prevent, Chapel Hill, NC USA

[5] Family Resource Ctr South Atlantic, Raleigh, NC USA

[6] Parent Advocates Adult Children Intellectual & De, Chapel Hill, NC USA

[7] Univ N Carolina, Dept Genet, Chapel Hill, NC USA

[8] Univ N Carolina, Sch Social Work, Family Support Program, Chapel Hill, NC USA

[9] Wake Cty Sickle Cell Support Grp, Raleigh, NC USA

[10] Univ N Carolina, Dept Social Med, Chapel Hill, NC USA

[11] Northwestern Univ, Dept Med Social Sci, Feinberg Sch Med, Chicago, IL 60611 USA

[12] Northwestern Univ, Robert H Lurie Comprehens Canc Ctr, Chicago, IL 60611 USA

来源：

PERSONALIZED MEDICINE | 2020年 / 17卷 / 06期

基金：

美国医疗保健研究与质量局;

关键词：

clinical trial; community-academic partnerships; community engagement; diagnostic odyssey; genetics; genomic sequencing; health equity; health services research; precision medicine; underserved populations; AFRICAN-AMERICANS; ENGAGEMENT; PARTICIPATION; LESSONS; LEGACY; RECRUITMENT; BIOBANKING; FAMILIES; PROJECT; POLICY;

D O I：

10.2217/pme-2020-0074

中图分类号：

R9 [药学];

学科分类号：

1007 ;

摘要：

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.

引用

页码：435 / 444

页数：10

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