Currently, there is no systematic platform to gather and process patient/parent perspectives and clinical observations for research use (gap), therefore such critical information is not commonly considered in designing genetics studies.

Despite the recent emphasis on personalized medicine, it is not yet clear how genetic information may be used in patient-centered outcomes research, in part owing to the lack of communication between genetics and outcomes researchers.

The Autism Genetics and Outcomes (AutGO) project aims to make a conceptual connection between the two disciplines (outcomes and genetics research). We outline how a partnership was established among a wide range of stakeholders and report the findings and recommendations for the research community.