The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses.
Use the free AutGO stakeholder-engagement workflow to co-write genetics-outcomes hypotheses before you finalize your autism study design.
01Research in Context
What this study did
Zohreh et al. (2020) built a free, step-by-step guide called AutGO.
The guide helps families, doctors, and scientists co-write research questions that link genes to real-life autism outcomes.
It is not a new gene test; it is a planning tool you can download and run before you start a study.
What they found
The team showed that the AutGO workflow is doable.
Stakeholders met, filled out the worksheets, and left with clear, testable ideas that mixed genetics and everyday skills like language or sleep.
How this fits with other research
Shen et al. (2016) hunted for single gene links in the RELN pathway and came up empty. AutGO does not contradict this; it just says "ask the group first" before you spend money on such hunts.
Byiers et al. (2025) used community partners to build a Spanish autism screen. Like AutGO, they prove that listening to stakeholders early makes better tools.
Stevens et al. (2018) built the quick 5-item OERA screen without family input. AutGO extends this idea by adding a formal slot for families to shape the question before the tool is even drafted.
Why it matters
If you run autism studies, plug AutGO into your next grant timeline. One virtual meeting using the worksheets can save months of rework and boost IRB approval because families helped write the aims.
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02At a glance
03Original abstract
The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof-of-concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi-structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi-structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research. LAY SUMMARY: We used a community-based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286-1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.
Autism research : official journal of the International Society for Autism Research, 2020 · doi:10.1542/peds.2009-1878d