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Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)

BACKGROUND: Concerns over the need to improve translational aspects of genetics research studies and engaging community members in the research process have been noted in the literature and raised by patient advocates. In addition to the work done by patient advocacy groups, organizations such as th...

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Autores principales: Talebizadeh, Zohreh, Shah, Ayten
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6019410/
https://www.ncbi.nlm.nih.gov/pubmed/29508356
http://dx.doi.org/10.1007/s40271-018-0302-z
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author Talebizadeh, Zohreh
Shah, Ayten
author_facet Talebizadeh, Zohreh
Shah, Ayten
author_sort Talebizadeh, Zohreh
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description BACKGROUND: Concerns over the need to improve translational aspects of genetics research studies and engaging community members in the research process have been noted in the literature and raised by patient advocates. In addition to the work done by patient advocacy groups, organizations such as the Patient-Centered Outcomes Research Institute advocate for a change in the culture of research from being researcher-driven to becoming more patient-driven. OBJECTIVE: Our project, Autism Genetics and Outcomes (AutGO), consists of two phases. The goal for phase I was to initiate a general discussion around the main topic (i.e., linking genetics and outcomes research). We used the Patient-Centered Outcomes Research Institute engagement approach to: (aim 1) develop a partnership with a wide range of stakeholders to assess their perspective on developing projects that use both genetics and outcomes research data/principles; (aim 2) identify barriers, facilitators, and needs to promote engagement in patient-centered genetics research; and (aim 3) distill and describe actions that may facilitate utilization of patient/parent perspectives in designing genetics research studies. METHODS: In phase I, we formed a community advisory board composed of 33 participants, including outcomes and genetics researchers, clinicians, healthcare providers, patients/family members, and community/industry representatives, and convened six sessions over the 12-month period. We structured the sessions as a combination of online PowerPoint presentations, surveys, and in-person group discussions. During the sessions, we discussed topics pertaining to linking genetics and outcomes research and reviewed relevant materials, including patient stories, research projects, and existing resources. RESULTS: Two sets of surveys, project evaluations (k = 2) and session evaluations (k = 6), were distributed among participants. Feedback was analyzed using content analysis strategies to identify the themes and subthemes. Herein, we describe: the established partnership (aim 1), the identified barriers, facilitators, and needs (aim 2), as well as the lessons learned and suggested recommendations for the research community (aim 3). Following phase I participants’ recommendation, in phase II, we will focus on a specific disease (i.e., autism); this projected plan is briefly outlined to highlight the overarching goal of the project and its potential significance. We also discuss the study limitations, challenges for conducting this type of multidisciplinary work, as well as potential ways to address them. CONCLUSIONS: The AutGO project has created a unique collaborative forum to facilitate the much needed dialogue between genetics and outcomes researchers, which may contribute to finding ways to improve the translational aspects of genetics research studies. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40271-018-0302-z) contains supplementary material, which is available to authorized users.
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spelling pubmed-60194102018-07-11 Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study) Talebizadeh, Zohreh Shah, Ayten Patient Original Research Article BACKGROUND: Concerns over the need to improve translational aspects of genetics research studies and engaging community members in the research process have been noted in the literature and raised by patient advocates. In addition to the work done by patient advocacy groups, organizations such as the Patient-Centered Outcomes Research Institute advocate for a change in the culture of research from being researcher-driven to becoming more patient-driven. OBJECTIVE: Our project, Autism Genetics and Outcomes (AutGO), consists of two phases. The goal for phase I was to initiate a general discussion around the main topic (i.e., linking genetics and outcomes research). We used the Patient-Centered Outcomes Research Institute engagement approach to: (aim 1) develop a partnership with a wide range of stakeholders to assess their perspective on developing projects that use both genetics and outcomes research data/principles; (aim 2) identify barriers, facilitators, and needs to promote engagement in patient-centered genetics research; and (aim 3) distill and describe actions that may facilitate utilization of patient/parent perspectives in designing genetics research studies. METHODS: In phase I, we formed a community advisory board composed of 33 participants, including outcomes and genetics researchers, clinicians, healthcare providers, patients/family members, and community/industry representatives, and convened six sessions over the 12-month period. We structured the sessions as a combination of online PowerPoint presentations, surveys, and in-person group discussions. During the sessions, we discussed topics pertaining to linking genetics and outcomes research and reviewed relevant materials, including patient stories, research projects, and existing resources. RESULTS: Two sets of surveys, project evaluations (k = 2) and session evaluations (k = 6), were distributed among participants. Feedback was analyzed using content analysis strategies to identify the themes and subthemes. Herein, we describe: the established partnership (aim 1), the identified barriers, facilitators, and needs (aim 2), as well as the lessons learned and suggested recommendations for the research community (aim 3). Following phase I participants’ recommendation, in phase II, we will focus on a specific disease (i.e., autism); this projected plan is briefly outlined to highlight the overarching goal of the project and its potential significance. We also discuss the study limitations, challenges for conducting this type of multidisciplinary work, as well as potential ways to address them. CONCLUSIONS: The AutGO project has created a unique collaborative forum to facilitate the much needed dialogue between genetics and outcomes researchers, which may contribute to finding ways to improve the translational aspects of genetics research studies. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40271-018-0302-z) contains supplementary material, which is available to authorized users. Springer International Publishing 2018-03-05 2018 /pmc/articles/PMC6019410/ /pubmed/29508356 http://dx.doi.org/10.1007/s40271-018-0302-z Text en © The Author(s) 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Research Article
Talebizadeh, Zohreh
Shah, Ayten
Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
title Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
title_full Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
title_fullStr Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
title_full_unstemmed Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
title_short Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
title_sort building a bridge between genetics and outcomes research: application in autism (the autgo study)
topic Original Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6019410/
https://www.ncbi.nlm.nih.gov/pubmed/29508356
http://dx.doi.org/10.1007/s40271-018-0302-z
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