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COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic

BACKGROUND: This survey of COVID-19 interventional studies encompasses, and expands upon, a previous publication [1] examining individual participant level data (IPD) sharing intentions for COVID-related trials and publications prior to June 30, 2020. METHODS: Replicating our inclusion criteria from...

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Autores principales: Larson, Kristina, Sim, Ida, von Isenburg, Megan, Levenstein, Marcia, Rockhold, Frank, Neumann, Stan, D'Arcy, Catherine, Graham, Elizabeth, Zuckerman, David, Li, Rebecca
Formato: Online Artículo Texto
Lenguaje:English
Publicado: The Authors. Published by Elsevier Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8847110/
https://www.ncbi.nlm.nih.gov/pubmed/35182738
http://dx.doi.org/10.1016/j.cct.2022.106709
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author Larson, Kristina
Sim, Ida
von Isenburg, Megan
Levenstein, Marcia
Rockhold, Frank
Neumann, Stan
D'Arcy, Catherine
Graham, Elizabeth
Zuckerman, David
Li, Rebecca
author_facet Larson, Kristina
Sim, Ida
von Isenburg, Megan
Levenstein, Marcia
Rockhold, Frank
Neumann, Stan
D'Arcy, Catherine
Graham, Elizabeth
Zuckerman, David
Li, Rebecca
author_sort Larson, Kristina
collection PubMed
description BACKGROUND: This survey of COVID-19 interventional studies encompasses, and expands upon, a previous publication [1] examining individual participant level data (IPD) sharing intentions for COVID-related trials and publications prior to June 30, 2020. METHODS: Replicating our inclusion criteria from the original survey, we evaluated a larger dataset of 2759 trials and 281 publications in this follow-up survey for willingness to share IPD and studied if sharing sentiment has evolved since the beginning of the pandemic. RESULTS: We found that 18 months into the pandemic, data sharing intentions remained static at 15% for trials registered through ClinicalTrials.gov (ClinicalTrials.gov is a digital registry of information about publicly and privately funded clinical studies in which human volunteers participate in interventional or observational scientific research) prior to September 19, 2021 compared to our initial survey. However, a comparison of declared intentions to share IPD at the time of publication revealed a noticeable shift: affirmative intentions grew from 21.4% (6/28) in our original publications survey to 57% (160/281) in this survey. Within the subset of studies published within journals affiliated with the International Committee of Medical Journal Editors (ICMJE), positive sharing intentions are even higher (65%). CONCLUSIONS: Although intent to share data at the time of registration has not changed from our prior study in June 2020, there is growing commitment to sharing data reflected in the increasing number of affirmative declarations at the time of publication. Actual sharing of data will accelerate new insights into COVID-19 through secondary re-use of data.
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spelling pubmed-88471102022-02-16 COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic Larson, Kristina Sim, Ida von Isenburg, Megan Levenstein, Marcia Rockhold, Frank Neumann, Stan D'Arcy, Catherine Graham, Elizabeth Zuckerman, David Li, Rebecca Contemp Clin Trials Article BACKGROUND: This survey of COVID-19 interventional studies encompasses, and expands upon, a previous publication [1] examining individual participant level data (IPD) sharing intentions for COVID-related trials and publications prior to June 30, 2020. METHODS: Replicating our inclusion criteria from the original survey, we evaluated a larger dataset of 2759 trials and 281 publications in this follow-up survey for willingness to share IPD and studied if sharing sentiment has evolved since the beginning of the pandemic. RESULTS: We found that 18 months into the pandemic, data sharing intentions remained static at 15% for trials registered through ClinicalTrials.gov (ClinicalTrials.gov is a digital registry of information about publicly and privately funded clinical studies in which human volunteers participate in interventional or observational scientific research) prior to September 19, 2021 compared to our initial survey. However, a comparison of declared intentions to share IPD at the time of publication revealed a noticeable shift: affirmative intentions grew from 21.4% (6/28) in our original publications survey to 57% (160/281) in this survey. Within the subset of studies published within journals affiliated with the International Committee of Medical Journal Editors (ICMJE), positive sharing intentions are even higher (65%). CONCLUSIONS: Although intent to share data at the time of registration has not changed from our prior study in June 2020, there is growing commitment to sharing data reflected in the increasing number of affirmative declarations at the time of publication. Actual sharing of data will accelerate new insights into COVID-19 through secondary re-use of data. The Authors. Published by Elsevier Inc. 2022-04 2022-02-16 /pmc/articles/PMC8847110/ /pubmed/35182738 http://dx.doi.org/10.1016/j.cct.2022.106709 Text en © 2022 The Authors. Published by Elsevier Inc. Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
spellingShingle Article
Larson, Kristina
Sim, Ida
von Isenburg, Megan
Levenstein, Marcia
Rockhold, Frank
Neumann, Stan
D'Arcy, Catherine
Graham, Elizabeth
Zuckerman, David
Li, Rebecca
COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic
title COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic
title_full COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic
title_fullStr COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic
title_full_unstemmed COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic
title_short COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic
title_sort covid-19 interventional trials: analysis of data sharing intentions during a time of pandemic
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8847110/
https://www.ncbi.nlm.nih.gov/pubmed/35182738
http://dx.doi.org/10.1016/j.cct.2022.106709
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