Promoting Partnerships Between Patient Advocacy Groups and Researchers to Improve Autism Research

SIG Leaders: Alycia Halladay & Shafali Jeste SIG Co-Leader: Charlotte DiStefano Advances in genetic testing have resulted in the discovery of multiple rare variants that cause autism spectrum disorder (ASD). In order to create communities and accelerate our understanding of these disorders, affected families have established Patient Advocacy Groups (PAGs). This SIG aims to increase crosstalk between these PAGs and researchers and clinicians who study and care for these populations, with focus on the following key topics that span disorders: database development, centralized resources for families, coordinated clinical care, development of infrastructure for collaborative studies and for clinical trials, leading to collaborative research and consistent clinical guidelines. PAGs and patient representatives will provide insight into the diagnostic process and the gaps that exist between diagnosis and clinical care. The impact of research on these families with ASD-related genetic disorders will be of key consideration.