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219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY
OBJECTIVES/GOALS: Methods for recruitment and retention of participants in research have been extensively discussed, but procedures to end studies in a way that is respectful to participants and keeps them engaged are seldom described. We relate the procedures to close a study focused on genomic DNA...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Cambridge University Press
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129560/ http://dx.doi.org/10.1017/cts.2023.290 |
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author | Arrieta, Martha Whiddon, Frederick P. Parker, L. Lynette Whiddon, Frederick P. Sutherland, Erica Whiddon, Frederick P. Sobol, Robert W. |
author_facet | Arrieta, Martha Whiddon, Frederick P. Parker, L. Lynette Whiddon, Frederick P. Sutherland, Erica Whiddon, Frederick P. Sobol, Robert W. |
author_sort | Arrieta, Martha |
collection | PubMed |
description | OBJECTIVES/GOALS: Methods for recruitment and retention of participants in research have been extensively discussed, but procedures to end studies in a way that is respectful to participants and keeps them engaged are seldom described. We relate the procedures to close a study focused on genomic DNA damage and DNA repair capacity in a longitudinal population sample. METHODS/STUDY POPULATION: Data collection, which included the provision of 30 ml blood sample along with a health status survey and anthropometric measurements, was discontinued earlier than anticipated during the fourth of a five-year Community Engaged Research (CEnR) study focused on residents of historically marginalized, low wealth communities. In collaboration with the project’s Community Advisory Board, we devised a strategy to inform study participants of the study closure, which included: 1) attempts at one-on-one contact via phone, 2) provision of a study closure packet, 3) periodic mailing of study updates through study year five, 4) sustained interaction with participants through invitations to participate in additional research projects. RESULTS/ANTICIPATED RESULTS: Among 149 participants (65% female, 99% of African American descent), 106 (71%) have been reached by phone. The communication included: 1) expressions of gratitude for their participation; 2) explanation of study findings to date; and 3) assurance that data analysis continued. Among those reached, 96% agreed to ongoing communication and 97% agreed to be contacted about future studies. We continue procedures to reach the remaining 43 participants. Over the study closure period, two qualitative studies offered opportunities for participants to join in focus groups (FG). The first one queried perceptions of community-based research. The response rate was 66% among 65 persons invited. The second study, focused on COVID-19 knowledge and invited 39 individuals with 24 scheduled to participate (62% response rate). DISCUSSION/SIGNIFICANCE: Translational research views the participant as an active partner. Study closure offers an opportunity to foster a long-lasting participant-research institution partnership, while also promoting participants’ broad engagement and familiarity with research. Respectful research closure is an important step in CEnR. |
format | Online Article Text |
id | pubmed-10129560 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Cambridge University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-101295602023-04-26 219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY Arrieta, Martha Whiddon, Frederick P. Parker, L. Lynette Whiddon, Frederick P. Sutherland, Erica Whiddon, Frederick P. Sobol, Robert W. J Clin Transl Sci Health Equity and Community Engagement OBJECTIVES/GOALS: Methods for recruitment and retention of participants in research have been extensively discussed, but procedures to end studies in a way that is respectful to participants and keeps them engaged are seldom described. We relate the procedures to close a study focused on genomic DNA damage and DNA repair capacity in a longitudinal population sample. METHODS/STUDY POPULATION: Data collection, which included the provision of 30 ml blood sample along with a health status survey and anthropometric measurements, was discontinued earlier than anticipated during the fourth of a five-year Community Engaged Research (CEnR) study focused on residents of historically marginalized, low wealth communities. In collaboration with the project’s Community Advisory Board, we devised a strategy to inform study participants of the study closure, which included: 1) attempts at one-on-one contact via phone, 2) provision of a study closure packet, 3) periodic mailing of study updates through study year five, 4) sustained interaction with participants through invitations to participate in additional research projects. RESULTS/ANTICIPATED RESULTS: Among 149 participants (65% female, 99% of African American descent), 106 (71%) have been reached by phone. The communication included: 1) expressions of gratitude for their participation; 2) explanation of study findings to date; and 3) assurance that data analysis continued. Among those reached, 96% agreed to ongoing communication and 97% agreed to be contacted about future studies. We continue procedures to reach the remaining 43 participants. Over the study closure period, two qualitative studies offered opportunities for participants to join in focus groups (FG). The first one queried perceptions of community-based research. The response rate was 66% among 65 persons invited. The second study, focused on COVID-19 knowledge and invited 39 individuals with 24 scheduled to participate (62% response rate). DISCUSSION/SIGNIFICANCE: Translational research views the participant as an active partner. Study closure offers an opportunity to foster a long-lasting participant-research institution partnership, while also promoting participants’ broad engagement and familiarity with research. Respectful research closure is an important step in CEnR. Cambridge University Press 2023-04-24 /pmc/articles/PMC10129560/ http://dx.doi.org/10.1017/cts.2023.290 Text en © The Association for Clinical and Translational Science 2023 https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work. |
spellingShingle | Health Equity and Community Engagement Arrieta, Martha Whiddon, Frederick P. Parker, L. Lynette Whiddon, Frederick P. Sutherland, Erica Whiddon, Frederick P. Sobol, Robert W. 219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY |
title | 219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY |
title_full | 219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY |
title_fullStr | 219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY |
title_full_unstemmed | 219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY |
title_short | 219 RESPECTUFUL CLOSURE OF A CEnR DNA INTEGRITY STUDY |
title_sort | 219 respectuful closure of a cenr dna integrity study |
topic | Health Equity and Community Engagement |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129560/ http://dx.doi.org/10.1017/cts.2023.290 |
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