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Putting participants and study partners FIRST when clinical trials end early
Between 2018 and 2019, multiple clinical trials ended earlier than planned, resulting in calls to improve communication with and support for participants and their study partners (“dyads”). The multidisciplinary Participant Follow‐Up Improvement in Research Studies and Trials (Participant FIRST) Wor...
Autores principales: | , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9926498/ https://www.ncbi.nlm.nih.gov/pubmed/35917209 http://dx.doi.org/10.1002/alz.12732 |
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author | Largent, Emily A. Walter, Sarah Childs, Nancy Dacks, Penny A. Dodge, Shana Florian, Hana Jackson, Jonathan Llibre Guerra, Jorge J. Iturriaga, Erin Miller, David S. Moreno, Monica Nosheny, Rachel L. Obisesan, Thomas O. Portacolone, Elena Siddiqi, Bernadette Silverberg, Nina Warren, Rueben C. Welsh‐Bohmer, Kathleen A. Edelmayer, Rebecca M. |
author_facet | Largent, Emily A. Walter, Sarah Childs, Nancy Dacks, Penny A. Dodge, Shana Florian, Hana Jackson, Jonathan Llibre Guerra, Jorge J. Iturriaga, Erin Miller, David S. Moreno, Monica Nosheny, Rachel L. Obisesan, Thomas O. Portacolone, Elena Siddiqi, Bernadette Silverberg, Nina Warren, Rueben C. Welsh‐Bohmer, Kathleen A. Edelmayer, Rebecca M. |
author_sort | Largent, Emily A. |
collection | PubMed |
description | Between 2018 and 2019, multiple clinical trials ended earlier than planned, resulting in calls to improve communication with and support for participants and their study partners (“dyads”). The multidisciplinary Participant Follow‐Up Improvement in Research Studies and Trials (Participant FIRST) Work Group met throughout 2021. Its goals were to identify best practices for communicating with and supporting dyads affected by early trial stoppage. The Participant FIRST Work Group identified 17 key recommendations spanning the pre‐trial, mid‐trial, and post‐trial periods. These focus on prospectively allocating sufficient resources for orderly closeout; developing dyad‐centered communication plans; helping dyads build and maintain support networks; and, if a trial stops, informing dyads rapidly. Participants and study partners invest time, effort, and hope in their research participation. The research community should take intentional steps toward better communicating with and supporting participants when clinical trials end early. The Participant FIRST recommendations are a practical guide for embarking on that journey. |
format | Online Article Text |
id | pubmed-9926498 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-99264982023-04-12 Putting participants and study partners FIRST when clinical trials end early Largent, Emily A. Walter, Sarah Childs, Nancy Dacks, Penny A. Dodge, Shana Florian, Hana Jackson, Jonathan Llibre Guerra, Jorge J. Iturriaga, Erin Miller, David S. Moreno, Monica Nosheny, Rachel L. Obisesan, Thomas O. Portacolone, Elena Siddiqi, Bernadette Silverberg, Nina Warren, Rueben C. Welsh‐Bohmer, Kathleen A. Edelmayer, Rebecca M. Alzheimers Dement Policy Forum Between 2018 and 2019, multiple clinical trials ended earlier than planned, resulting in calls to improve communication with and support for participants and their study partners (“dyads”). The multidisciplinary Participant Follow‐Up Improvement in Research Studies and Trials (Participant FIRST) Work Group met throughout 2021. Its goals were to identify best practices for communicating with and supporting dyads affected by early trial stoppage. The Participant FIRST Work Group identified 17 key recommendations spanning the pre‐trial, mid‐trial, and post‐trial periods. These focus on prospectively allocating sufficient resources for orderly closeout; developing dyad‐centered communication plans; helping dyads build and maintain support networks; and, if a trial stops, informing dyads rapidly. Participants and study partners invest time, effort, and hope in their research participation. The research community should take intentional steps toward better communicating with and supporting participants when clinical trials end early. The Participant FIRST recommendations are a practical guide for embarking on that journey. John Wiley and Sons Inc. 2022-08-02 2022-12 /pmc/articles/PMC9926498/ /pubmed/35917209 http://dx.doi.org/10.1002/alz.12732 Text en © 2022 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. |
spellingShingle | Policy Forum Largent, Emily A. Walter, Sarah Childs, Nancy Dacks, Penny A. Dodge, Shana Florian, Hana Jackson, Jonathan Llibre Guerra, Jorge J. Iturriaga, Erin Miller, David S. Moreno, Monica Nosheny, Rachel L. Obisesan, Thomas O. Portacolone, Elena Siddiqi, Bernadette Silverberg, Nina Warren, Rueben C. Welsh‐Bohmer, Kathleen A. Edelmayer, Rebecca M. Putting participants and study partners FIRST when clinical trials end early |
title | Putting participants and study partners FIRST when clinical trials end early |
title_full | Putting participants and study partners FIRST when clinical trials end early |
title_fullStr | Putting participants and study partners FIRST when clinical trials end early |
title_full_unstemmed | Putting participants and study partners FIRST when clinical trials end early |
title_short | Putting participants and study partners FIRST when clinical trials end early |
title_sort | putting participants and study partners first when clinical trials end early |
topic | Policy Forum |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9926498/ https://www.ncbi.nlm.nih.gov/pubmed/35917209 http://dx.doi.org/10.1002/alz.12732 |
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