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

ABSTRACT:

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

SUBMITTER: Talebizadeh Z 

PROVIDER: S-EPMC6019410 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature