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

Ida Griesemer; Brooke S. Staley; Alexandra F. Lightfoot; Lizzy Bain; Derrick Byrd; Carol Conway; Tracey L. Grant; Barbara Leach; Laura Milko; Lonna Mollison; Nadiah Porter; Sharron Reid; Gerri Smith; Margaret Waltz; Jonathan S. Berg; Christine Rini; Julianne M. O'Daniel

doi:10.2217/pme-2020-0074

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

Ida Griesemer^*, Brooke S. Staley, Alexandra F. Lightfoot, Lizzy Bain, Derrick Byrd, Carol Conway, Tracey L. Grant, Barbara Leach, Laura Milko, Lonna Mollison, Nadiah Porter, Sharron Reid, Gerri Smith, Margaret Waltz, Jonathan S. Berg, Christine Rini, Julianne M. O'Daniel

^*Corresponding author for this work

Medical Social Sciences

Research output: Contribution to journal › Article › peer-review

5 Scopus citations

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.

Original language	English (US)
Pages (from-to)	435-444
Number of pages	10
Journal	Personalized Medicine
Volume	17
Issue number	6
DOIs	https://doi.org/10.2217/pme-2020-0074
State	Published - Nov 2020

Keywords

clinical trial
community engagement
community-academic partnerships
diagnostic odyssey
genetics
genomic sequencing
health equity
health services research
precision medicine
underserved populations

ASJC Scopus subject areas

Molecular Medicine
Pharmacology

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10.2217/pme-2020-0074

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Griesemer, I., Staley, B. S., Lightfoot, A. F., Bain, L., Byrd, D., Conway, C., Grant, T. L., Leach, B., Milko, L., Mollison, L., Porter, N., Reid, S., Smith, G., Waltz, M., Berg, J. S., Rini, C., & O'Daniel, J. M. (2020). Engaging community stakeholders in research on best practices for clinical genomic sequencing. Personalized Medicine, 17(6), 435-444. https://doi.org/10.2217/pme-2020-0074

@article{cef9cd521e9947588f43721f899148c7,

title = "Engaging community stakeholders in research on best practices for clinical genomic sequencing",

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.",

keywords = "clinical trial, community engagement, community-academic partnerships, diagnostic odyssey, genetics, genomic sequencing, health equity, health services research, precision medicine, underserved populations",

author = "Ida Griesemer and Staley, {Brooke S.} and Lightfoot, {Alexandra F.} and Lizzy Bain and Derrick Byrd and Carol Conway and Grant, {Tracey L.} and Barbara Leach and Laura Milko and Lonna Mollison and Nadiah Porter and Sharron Reid and Gerri Smith and Margaret Waltz and Berg, {Jonathan S.} and Christine Rini and O'Daniel, {Julianne M.}",

note = "Funding Information: Support for this research was provided by the National Human Genome Research Institute (NHGRI) [U01HG006487], the National Cancer Institute (NCI) [RFA-HG-12-009], the National Center for Advancing Translations Sciences [UL1TR002489] and the Agency for Healthcare Research and Quality (AHRQ) sponsored by The Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill [T32 HS000032] (for I Griesemer). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript. Publisher Copyright: {\textcopyright} 2020 Ida Griesemer.",

year = "2020",

month = nov,

doi = "10.2217/pme-2020-0074",

language = "English (US)",

volume = "17",

pages = "435--444",

journal = "Personalized Medicine",

issn = "1741-0541",

publisher = "Future Medicine Ltd.",

number = "6",

}

Griesemer, I, Staley, BS, Lightfoot, AF, Bain, L, Byrd, D, Conway, C, Grant, TL, Leach, B, Milko, L, Mollison, L, Porter, N, Reid, S, Smith, G, Waltz, M, Berg, JS, Rini, C & O'Daniel, JM 2020, 'Engaging community stakeholders in research on best practices for clinical genomic sequencing', Personalized Medicine, vol. 17, no. 6, pp. 435-444. https://doi.org/10.2217/pme-2020-0074

TY - JOUR

T1 - Engaging community stakeholders in research on best practices for clinical genomic sequencing

AU - Griesemer, Ida

AU - Staley, Brooke S.

AU - Lightfoot, Alexandra F.

AU - Bain, Lizzy

AU - Byrd, Derrick

AU - Conway, Carol

AU - Grant, Tracey L.

AU - Leach, Barbara

AU - Milko, Laura

AU - Mollison, Lonna

AU - Porter, Nadiah

AU - Reid, Sharron

AU - Smith, Gerri

AU - Waltz, Margaret

AU - Berg, Jonathan S.

AU - Rini, Christine

AU - O'Daniel, Julianne M.

N1 - Funding Information: Support for this research was provided by the National Human Genome Research Institute (NHGRI) [U01HG006487], the National Cancer Institute (NCI) [RFA-HG-12-009], the National Center for Advancing Translations Sciences [UL1TR002489] and the Agency for Healthcare Research and Quality (AHRQ) sponsored by The Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill [T32 HS000032] (for I Griesemer). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript. Publisher Copyright: © 2020 Ida Griesemer.

PY - 2020/11

Y1 - 2020/11

N2 - 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.

AB - 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.

KW - clinical trial

KW - community engagement

KW - community-academic partnerships

KW - diagnostic odyssey

KW - genetics

KW - genomic sequencing

KW - health equity

KW - health services research

KW - precision medicine

KW - underserved populations

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U2 - 10.2217/pme-2020-0074

DO - 10.2217/pme-2020-0074

M3 - Article

C2 - 33026293

AN - SCOPUS:85094983070

SN - 1741-0541

VL - 17

SP - 435

EP - 444

JO - Personalized Medicine

JF - Personalized Medicine

IS - 6

ER -

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

Abstract

Keywords

ASJC Scopus subject areas

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