Introducing youth to clinical research: Development and pilot implementation of a children’s activity book
Abstract Introduction: Children continue to be an underrepresented population in research and clinical trials due to difficulties encountered in recruitment, assenting, and retention processes. “Sofia Learns About Research” is a children’s activity book that introduces youth to clinical research a...
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| Format: | Article |
| Language: | English |
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Cambridge University Press
2025-01-01
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| Series: | Journal of Clinical and Translational Science |
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| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866124006782/type/journal_article |
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| _version_ | 1823856667381465088 |
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| author | Renee Cadzow Andy Strohmeier Erin Carnes Teresa Quattrin |
| author_facet | Renee Cadzow Andy Strohmeier Erin Carnes Teresa Quattrin |
| author_sort | Renee Cadzow |
| collection | DOAJ |
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Abstract
Introduction:
Children continue to be an underrepresented population in research and clinical trials due to difficulties encountered in recruitment, assenting, and retention processes. “Sofia Learns About Research” is a children’s activity book that introduces youth to clinical research and basic elements of clinical trials.
Methods:
Development of the activity book began in 2016, with publication of the first paper version in 2017 and an online version adapted for computer and tablet users in 2019. In 2019, we developed internal review board-approved pre/post surveys with five statements (written at ≤ 3rd-grade level) reflecting key concepts covered in the book. Participants were asked to indicate whether they agreed, disagreed, or were not sure about each of the statements and if they would ever want to be part of a research study. Preliminary analyses included descriptive statistics and cross-tabulations with chi squares.
Results:
Despite delays in dissemination and outreach due to the COVID-19 pandemic, we obtained feedback from over 170 diverse persons across a spectrum of communities and community partners. After book exposure, more participants knew that both children and parents have to assent/consent and that participants can withdraw from a study at any time.
Conclusions:
The book is an important advocacy tool with a long-term aim of increasing children’s knowledge and awareness about clinical research, ultimately leading to enhanced participation in clinical research and trials.
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| format | Article |
| id | doaj-art-651d581080fc404ea5da98552ad1f7c5 |
| institution | Kabale University |
| issn | 2059-8661 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj-art-651d581080fc404ea5da98552ad1f7c52025-02-12T05:49:10ZengCambridge University PressJournal of Clinical and Translational Science2059-86612025-01-01910.1017/cts.2024.678Introducing youth to clinical research: Development and pilot implementation of a children’s activity bookRenee Cadzow0Andy Strohmeier1Erin Carnes2Teresa Quattrin3https://orcid.org/0000-0002-2385-9278Department of Epidemiology and Environmental Health, School of Public Health and Health Professions, University at Buffalo, Buffalo, NY, USA Clinical and Translational Science Institute, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USAClinical and Translational Science Institute, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USAClinical and Translational Science Institute, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USAClinical and Translational Science Institute, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA Abstract Introduction: Children continue to be an underrepresented population in research and clinical trials due to difficulties encountered in recruitment, assenting, and retention processes. “Sofia Learns About Research” is a children’s activity book that introduces youth to clinical research and basic elements of clinical trials. Methods: Development of the activity book began in 2016, with publication of the first paper version in 2017 and an online version adapted for computer and tablet users in 2019. In 2019, we developed internal review board-approved pre/post surveys with five statements (written at ≤ 3rd-grade level) reflecting key concepts covered in the book. Participants were asked to indicate whether they agreed, disagreed, or were not sure about each of the statements and if they would ever want to be part of a research study. Preliminary analyses included descriptive statistics and cross-tabulations with chi squares. Results: Despite delays in dissemination and outreach due to the COVID-19 pandemic, we obtained feedback from over 170 diverse persons across a spectrum of communities and community partners. After book exposure, more participants knew that both children and parents have to assent/consent and that participants can withdraw from a study at any time. Conclusions: The book is an important advocacy tool with a long-term aim of increasing children’s knowledge and awareness about clinical research, ultimately leading to enhanced participation in clinical research and trials. https://www.cambridge.org/core/product/identifier/S2059866124006782/type/journal_articleChildrenclinical researchclinical trialsdiversityeducationspecial populations |
| spellingShingle | Renee Cadzow Andy Strohmeier Erin Carnes Teresa Quattrin Introducing youth to clinical research: Development and pilot implementation of a children’s activity book Journal of Clinical and Translational Science Children clinical research clinical trials diversity education special populations |
| title | Introducing youth to clinical research: Development and pilot implementation of a children’s activity book |
| title_full | Introducing youth to clinical research: Development and pilot implementation of a children’s activity book |
| title_fullStr | Introducing youth to clinical research: Development and pilot implementation of a children’s activity book |
| title_full_unstemmed | Introducing youth to clinical research: Development and pilot implementation of a children’s activity book |
| title_short | Introducing youth to clinical research: Development and pilot implementation of a children’s activity book |
| title_sort | introducing youth to clinical research development and pilot implementation of a children s activity book |
| topic | Children clinical research clinical trials diversity education special populations |
| url | https://www.cambridge.org/core/product/identifier/S2059866124006782/type/journal_article |
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