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Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience

Clinical research studies have navigated many changes throughout the COVID‐19 pandemic. We sought to describe the pandemic′s impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a majority of participants from underrepresented populations. We i...

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Autores principales: Kraft, Stephanie A., Russell, Heidi, Bensen, Jeannette T., Bonini, Katherine E., Robinson, Jill O., Sahin‐Hodoglugil, Nuriye, Renna, Kathleen, Hindorff, Lucia A., Kaufman, Dave, Horowitz, Carol R., Waltz, Margaret, Zepp, Jamilyn M., Knight, Sara J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9839535/
https://www.ncbi.nlm.nih.gov/pubmed/36341765
http://dx.doi.org/10.1002/ajmg.a.63033
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author Kraft, Stephanie A.
Russell, Heidi
Bensen, Jeannette T.
Bonini, Katherine E.
Robinson, Jill O.
Sahin‐Hodoglugil, Nuriye
Renna, Kathleen
Hindorff, Lucia A.
Kaufman, Dave
Horowitz, Carol R.
Waltz, Margaret
Zepp, Jamilyn M.
Knight, Sara J.
author_facet Kraft, Stephanie A.
Russell, Heidi
Bensen, Jeannette T.
Bonini, Katherine E.
Robinson, Jill O.
Sahin‐Hodoglugil, Nuriye
Renna, Kathleen
Hindorff, Lucia A.
Kaufman, Dave
Horowitz, Carol R.
Waltz, Margaret
Zepp, Jamilyn M.
Knight, Sara J.
author_sort Kraft, Stephanie A.
collection PubMed
description Clinical research studies have navigated many changes throughout the COVID‐19 pandemic. We sought to describe the pandemic′s impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a majority of participants from underrepresented populations. We interviewed (July to November 2020) and surveyed (May to August 2021) representatives of six projects in the Clinical Sequencing Evidence‐Generating Research (CSER) consortium, which studies the implementation of genome sequencing in the clinical care of patients from populations that are underrepresented in genomics research or are medically underserved. Questions focused on COVID′s impact on participant recruitment, enrollment, and engagement, and the transition to teleresearch. Responses were combined and thematically analyzed. Projects described factors at the project, institutional, and community levels that affected their experiences. Project factors included the project′s progress at the pandemic′s onset, the urgency of in‐person clinical care for the disease being studied, and the degree to which teleresearch procedures were already incorporated. Institutional and community factors included institutional guidance for research and clinical care and the burden of COVID on the local community. Overall, being responsive to community experiences and values was essential to how CSER navigated evolving challenges during the COVID‐19 pandemic.
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spelling pubmed-98395352023-01-26 Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience Kraft, Stephanie A. Russell, Heidi Bensen, Jeannette T. Bonini, Katherine E. Robinson, Jill O. Sahin‐Hodoglugil, Nuriye Renna, Kathleen Hindorff, Lucia A. Kaufman, Dave Horowitz, Carol R. Waltz, Margaret Zepp, Jamilyn M. Knight, Sara J. Am J Med Genet A Original Articles Clinical research studies have navigated many changes throughout the COVID‐19 pandemic. We sought to describe the pandemic′s impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a majority of participants from underrepresented populations. We interviewed (July to November 2020) and surveyed (May to August 2021) representatives of six projects in the Clinical Sequencing Evidence‐Generating Research (CSER) consortium, which studies the implementation of genome sequencing in the clinical care of patients from populations that are underrepresented in genomics research or are medically underserved. Questions focused on COVID′s impact on participant recruitment, enrollment, and engagement, and the transition to teleresearch. Responses were combined and thematically analyzed. Projects described factors at the project, institutional, and community levels that affected their experiences. Project factors included the project′s progress at the pandemic′s onset, the urgency of in‐person clinical care for the disease being studied, and the degree to which teleresearch procedures were already incorporated. Institutional and community factors included institutional guidance for research and clinical care and the burden of COVID on the local community. Overall, being responsive to community experiences and values was essential to how CSER navigated evolving challenges during the COVID‐19 pandemic. John Wiley & Sons, Inc. 2022-11-07 2023-02 /pmc/articles/PMC9839535/ /pubmed/36341765 http://dx.doi.org/10.1002/ajmg.a.63033 Text en © 2022 Wiley Periodicals LLC. This article is being made freely available through PubMed Central as part of the COVID-19 public health emergency response. It can be used for unrestricted research re-use and analysis in any form or by any means with acknowledgement of the original source, for the duration of the public health emergency.
spellingShingle Original Articles
Kraft, Stephanie A.
Russell, Heidi
Bensen, Jeannette T.
Bonini, Katherine E.
Robinson, Jill O.
Sahin‐Hodoglugil, Nuriye
Renna, Kathleen
Hindorff, Lucia A.
Kaufman, Dave
Horowitz, Carol R.
Waltz, Margaret
Zepp, Jamilyn M.
Knight, Sara J.
Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience
title Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience
title_full Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience
title_fullStr Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience
title_full_unstemmed Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience
title_short Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience
title_sort conducting clinical genomics research during the covid‐19 pandemic: lessons learned from the cser consortium experience
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9839535/
https://www.ncbi.nlm.nih.gov/pubmed/36341765
http://dx.doi.org/10.1002/ajmg.a.63033
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