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

共 50 条

[31] Best Practices for Obtaining Genomic Consent in Pediatric Traumatic Brain Injury Research
Schnur, Kaylee C.
Gill, Eliana
Guerrero, Alejandro
Osier, Nicole
Reuter-Rice, Karin
NURSING RESEARCH, 2019, 68 (02) : E11 - E20
[32] Engaging Community Stakeholders through a National Lupus Education Workshop
Cuevas, Karen Mancera
Ramsey-Goldman, Rosalind
McCalla, Sheryl
Canessa, Patricia
Aouhab, Zineb
ARTHRITIS & RHEUMATOLOGY, 2017, 69
[33] Best practices research
Mold, JW
Gregory, ME
FAMILY MEDICINE, 2003, 35 (02) : 131 - 134
[34] ENGAGING INTERNAL STAKEHOLDERS: REVITALIZING COMMUNITY ORGANIZATIONS THROUGH REBRANDING
Yakimova, Raisa
Merrilees, Bill
Miller, Dale
LOOKING FORWARD, LOOKING BACK: DRAWING ON THE PAST TO SHAPE THE FUTURE OF MARKETING, 2016, : 764 - 771
[35] Engaging the Community and Stakeholders to Develop Microbicide Communication Materials in Kenya
Ryan, Elizabeth
Bockh, Emily
Githuka, George
Mackenzie, Caroline
Olawo, Alice
Baker, A. Cornelius
Tolley, Elizabeth
AIDS RESEARCH AND HUMAN RETROVIRUSES, 2014, 30 : A96 - A97
[36] Engaging community mental health stakeholders in pharmacy cost management
Baker, JG
PSYCHIATRIC SERVICES, 2001, 52 (05) : 650 - 653
[37] A missing link in the bench-to-bedside paradigm: engaging regulatory stakeholders in clinical genomics research
O'Daniel, Julianne M.
Berg, Jonathan S.
GENOME MEDICINE, 2016, 8
[38] Best Practices for Engaging Users in a Web Conferencing Environment
Badia, Giovanna
Colosimo, April
2013 ASEE ANNUAL CONFERENCE, 2013,
[39] Engaging Stakeholders in Surgical Research: The Design of a Pragmatic Clinical Trial to Study Management of Acute Appendicitis
Ehlers, Anne P.
Davidson, Giana H.
Bizzell, Bonnie J.
Guiden, Mary K.
Skopin, Elliott
Flum, David R.
Lavallee, Danielle C.
JAMA SURGERY, 2016, 151 (06) : 580 - 582
[40] A missing link in the bench-to-bedside paradigm: engaging regulatory stakeholders in clinical genomics research
Julianne M. O’Daniel
Jonathan S. Berg
Genome Medicine, 8

← 1 2 3 4 5 →