AutGO Workshop 1: Summary

The PCORI AutGO KC-workshop, held in Kansas City (KC) on April 7, 2017, was conducted to introduce the AutGO project, goals, and methods. The workshop served as a kickoff meeting for this PCORI project.

The KC workshop consisted of the following five sections:

1. Introduction. Dr. Zohreh Talebizadeh (PI), gave an overview of the workshop objective/current status of the autism genetics research, PCORI mission/patient engagement, followed by welcome messages from the PCORI program officer and Children’s Mercy Research Institute. Video messages from Dr. Kim Smolderen and Dr. John Constantino sharing their perspectives about this PCORI project were shown.

2. A number of the AutGO study team members, including parents, clinicians, and scientists shared their perspectives: personal stories from parents who have children on autism spectrum, brief overview of genetic/phenotypic repositories (eMERGE, SSC, MSSNG, IAN, and AGRE), PCORI resources/infrastructures (PCORnet) and their applications, and examples of autism genetic research studies.

3. Representatives from local and national research community shared their perspectives and covered the following topics: Precision Medicine, parents/caregivers’ engagement in research design, Simons Foundation initiatives (SFARI and SPARK), American College of Medical Genetics recommendations, and brief overview of research projects on autism conducted at two Midwest institutes (MU and UIowa).

4. Representatives from the KC community introduced regional research assets/resources/initiatives, such as KCALSI, Collaborate2Cure, Behavioral Milestones, and Pathfinder HI.

5. Conclusion. Dr. Talebizadeh summarized future directions, projected plans & activities for the AutGO study

Click here for a PDF of the workshop summary.