Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: Arrieta, Martha, Whiddon, Frederick P., Parker, L. Lynette, Sutherland, Erica, Sobol, Robert W.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129560/
http://dx.doi.org/10.1017/cts.2023.290
_version_ 1785030770041028608
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
work_keys_str_mv AT arrietamartha 219respectufulclosureofacenrdnaintegritystudy
AT whiddonfrederickp 219respectufulclosureofacenrdnaintegritystudy
AT parkerllynette 219respectufulclosureofacenrdnaintegritystudy
AT whiddonfrederickp 219respectufulclosureofacenrdnaintegritystudy
AT sutherlanderica 219respectufulclosureofacenrdnaintegritystudy
AT whiddonfrederickp 219respectufulclosureofacenrdnaintegritystudy
AT sobolrobertw 219respectufulclosureofacenrdnaintegritystudy