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IGNITE network: Response of patients to genomic medicine interventions

BACKGROUND: The IGNITE network funds six genomic medicine projects. Though interventions varied, we hypothesized that synergies across projects could be leveraged to better understand the participant experiences with genomic medicine interventions. Therefore, we performed cross‐network analyses to i...

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Autores principales: Orlando, Lori A., Voils, Corrine, Horowitz, Carol R., Myers, Rachel A., Arwood, Meghan J., Cicali, Emily J., McDonough, Caitrin W., Pollin, Toni I., Guan, Yue, Levy, Kenneth D., Ramirez, Andrea, Quittner, Alexandra, Madden, Ebony B.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6503007/
https://www.ncbi.nlm.nih.gov/pubmed/30895746
http://dx.doi.org/10.1002/mgg3.636
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author Orlando, Lori A.
Voils, Corrine
Horowitz, Carol R.
Myers, Rachel A.
Arwood, Meghan J.
Cicali, Emily J.
McDonough, Caitrin W.
Pollin, Toni I.
Guan, Yue
Levy, Kenneth D.
Ramirez, Andrea
Quittner, Alexandra
Madden, Ebony B.
author_facet Orlando, Lori A.
Voils, Corrine
Horowitz, Carol R.
Myers, Rachel A.
Arwood, Meghan J.
Cicali, Emily J.
McDonough, Caitrin W.
Pollin, Toni I.
Guan, Yue
Levy, Kenneth D.
Ramirez, Andrea
Quittner, Alexandra
Madden, Ebony B.
author_sort Orlando, Lori A.
collection PubMed
description BACKGROUND: The IGNITE network funds six genomic medicine projects. Though interventions varied, we hypothesized that synergies across projects could be leveraged to better understand the participant experiences with genomic medicine interventions. Therefore, we performed cross‐network analyses to identify associations between participant demographics and attitudes toward the intervention (attitude), plan to share results (share), and quality of life (QOL). METHODS: Data collection for demographics, attitude, share, and QOL surveys were standardized across projects. Recruitment and survey administration varied by each project's protocol. RESULTS: Participants (N = 6,817) were 67.2% (N = 4,584) female, and 37.4% (N = 3,544) were minority. Mean age = 54.0 (sd 14.a). Younger participants were as follows: (1) more positive in attitude pre‐intervention (1.15‐fold decrease/10‐year age increase (OR)) and more negative after (1.14‐fold increase OR); (2) higher in QOL pre‐intervention (1.07‐fold increase OR) and postintervention; (3) more likely to share results (1.12‐fold increase OR). Race was significant when sharing results (white participants increased OR = 1.88), but not for change in QOL pre–postintervention or attitude. CONCLUSION: Our findings demonstrate the feasibility of this approach and identified a few key themes which are as follows: age was consistently significant across the three outcomes, whereas race had less of an impact than expected. However, these are only associations and thus warrant further study.
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spelling pubmed-65030072019-05-10 IGNITE network: Response of patients to genomic medicine interventions Orlando, Lori A. Voils, Corrine Horowitz, Carol R. Myers, Rachel A. Arwood, Meghan J. Cicali, Emily J. McDonough, Caitrin W. Pollin, Toni I. Guan, Yue Levy, Kenneth D. Ramirez, Andrea Quittner, Alexandra Madden, Ebony B. Mol Genet Genomic Med Original Articles BACKGROUND: The IGNITE network funds six genomic medicine projects. Though interventions varied, we hypothesized that synergies across projects could be leveraged to better understand the participant experiences with genomic medicine interventions. Therefore, we performed cross‐network analyses to identify associations between participant demographics and attitudes toward the intervention (attitude), plan to share results (share), and quality of life (QOL). METHODS: Data collection for demographics, attitude, share, and QOL surveys were standardized across projects. Recruitment and survey administration varied by each project's protocol. RESULTS: Participants (N = 6,817) were 67.2% (N = 4,584) female, and 37.4% (N = 3,544) were minority. Mean age = 54.0 (sd 14.a). Younger participants were as follows: (1) more positive in attitude pre‐intervention (1.15‐fold decrease/10‐year age increase (OR)) and more negative after (1.14‐fold increase OR); (2) higher in QOL pre‐intervention (1.07‐fold increase OR) and postintervention; (3) more likely to share results (1.12‐fold increase OR). Race was significant when sharing results (white participants increased OR = 1.88), but not for change in QOL pre–postintervention or attitude. CONCLUSION: Our findings demonstrate the feasibility of this approach and identified a few key themes which are as follows: age was consistently significant across the three outcomes, whereas race had less of an impact than expected. However, these are only associations and thus warrant further study. John Wiley and Sons Inc. 2019-03-20 /pmc/articles/PMC6503007/ /pubmed/30895746 http://dx.doi.org/10.1002/mgg3.636 Text en © 2019 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc. This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Articles
Orlando, Lori A.
Voils, Corrine
Horowitz, Carol R.
Myers, Rachel A.
Arwood, Meghan J.
Cicali, Emily J.
McDonough, Caitrin W.
Pollin, Toni I.
Guan, Yue
Levy, Kenneth D.
Ramirez, Andrea
Quittner, Alexandra
Madden, Ebony B.
IGNITE network: Response of patients to genomic medicine interventions
title IGNITE network: Response of patients to genomic medicine interventions
title_full IGNITE network: Response of patients to genomic medicine interventions
title_fullStr IGNITE network: Response of patients to genomic medicine interventions
title_full_unstemmed IGNITE network: Response of patients to genomic medicine interventions
title_short IGNITE network: Response of patients to genomic medicine interventions
title_sort ignite network: response of patients to genomic medicine interventions
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6503007/
https://www.ncbi.nlm.nih.gov/pubmed/30895746
http://dx.doi.org/10.1002/mgg3.636
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