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

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Stephanie A. Kraft , Heidi V. Russell , Jeannette T. Bensen , Katherine E. Bonini , Jill O. Robinson , Nuriye Sahin‐Hodoglugil , Kathleen Renna , Lucia A. Hindorff , David Kaufman , Carol R. Horowitz , Margaret Waltz , Jamilyn M. Zepp , Sara J. Knight ·

YOU? · · 2023 · Open Access · · DOI: https://doi.org/10.17615/g1f9-ew40

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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Infectious Diseases (Medical Specialty)

Concepts

Coronavirus disease 2019 (COVID-19) Pandemic 2019-20 coronavirus outbreak Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) Genomics Data science Biology Virology Genome Computer science Medicine Genetics Gene Pathology Outbreak Disease Infectious disease (medical specialty)

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Type: article
Language: en
Landing Page: https://doi.org/10.17615/g1f9-ew40
PDF: https://doi.org/10.17615/g1f9-ew40
OA Status: gold
Cited By: 1
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DOI: https://doi.org/10.17615/g1f9-ew40

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

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Language: en

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Publication year: 2023

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Publication date: 2023-01-01

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Authors: Stephanie A. Kraft, Heidi V. Russell, Jeannette T. Bensen, Katherine E. Bonini, Jill O. Robinson, Nuriye Sahin‐Hodoglugil, Kathleen Renna, Lucia A. Hindorff, David Kaufman, Carol R. Horowitz, Margaret Waltz, Jamilyn M. Zepp, Sara J. Knight

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Landing page: https://doi.org/10.17615/g1f9-ew40

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Concepts: Coronavirus disease 2019 (COVID-19), Pandemic, 2019-20 coronavirus outbreak, Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), Genomics, Data science, Biology, Virology, Genome, Computer science, Medicine, Genetics, Gene, Pathology, Outbreak, Disease, Infectious disease (medical specialty)

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Cited by: 1

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sustainable_development_goals[0].id	https://metadata.un.org/sdg/3
sustainable_development_goals[0].score	0.7200000286102295
sustainable_development_goals[0].display_name	Good health and well-being
citation_normalized_percentile.value	0.28996216
citation_normalized_percentile.is_in_top_1_percent	False
citation_normalized_percentile.is_in_top_10_percent	False