Autism Sharing Initiative is named a 2019 GA4GH Driver Project

NEW YORK (February 4, 2019) —The Autism Sharing Initiative (ASI), led by Autism Speaks and the Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials), will join the Global Alliance for Genomics and Health (GA4GH)as a 2019 Driver Project. This international group of 22 leading genomic data initiatives works collaboratively to develop and pilot GA4GH standards for sharing genomic and health related data.

“The Autism Sharing Initiative will connect one of the largest and most diverse collections of autism data in the world and responsibly make the information accessible to researchers,” said Dean Hartley, Ph.D., Autism Speaks senior director of discovery and translational science. “Collaboration on a global scale will accelerate the pace of research and development of personalized therapies that can improve quality of life for people with autism. ASI is honored to be chosen as a Driver Project and to work alongside experts championing open-science and responsible data sharing.”

The initiative combines the world’s most ambitious efforts in autism research to create the first federated, global network for sharing genomics and clinical data to speed discoveries and the development of precision therapeutics for autism. GA4GH brings together more than 500 leading organizations to create standards and frameworks for secure sharing of genomic and health-related data. Autism Speaks and the AIMS-2-Trials are advancing researchers’ understanding of autism in its many forms. Through the MSSNG project, Autism Speaks will release in the next few months a new database that has performed deep genotyping and phenotyping of 10,000 individuals and their family members affected by autism spectrum disorder, making all the data accessible for free to researchers. In the next few years, AIMS-2-TRIALS will build a pipeline for developing, testing and implementing new treatments for people with autism spectrum disorder through a clinical trial network, and open the database to the entire scientific community.

The other newly added Drive Projects are: Human Heredity and Health in Africa (H3Africa), GEnome Medical alliance Japan (GEM Japan), European Joint Programme on Rare Diseases (EJP RD), Swiss Personalized Health Network (SPHN), and EUCANCancer, EpiShare.

The projects were reviewed by an External Review Committee (Chair: David Altshuler, Vertex Pharmaceuticals; Co-Chairs: Niklas Blomberg, ELIXIR, and Kym Boycott, CHEO) and unanimously approved by the GA4GH Executive Committee. The projects were selected according to three criteria: global representation, scientific merit, and capacity to contribute in-kind resources to GA4GH development efforts.

“When we launched GA4GH Connect two years ago, I could only have hoped to reach the state we are in now, with global buy-in from some of the world’s most important genomics projects and a true mandate for GA4GH to help get data sharing off the ground in the near term,” said Ewan Birney, Director of EMBL-EBI and Chair of GA4GH.

“Together, the new projects significantly expand GA4GH’s global representation, strengthening our collaborations across Africa and Europe, as well as in Japan, and adding connections in 31 countries for a total of 97 across all Driver Projects,” said GA4GH CEO Peter Goodhand. “With these new projects, GA4GH now has strong direct engagement in 15 countries.”  

The Autism Sharing Initiative will create one of the largest and most diverse repositories of autism information in the world, all accessible to researchers around the globe. This federated repository will accelerate research, improve gene discovery, and enable development of new algorithms, including previously unseen machine-learning applications. The work will enhance exchange of variant interpretations, diagnostics, clinical trial recruitment and patient engagement, ultimately leading to better outcomes for people with autism spectrum disorder and their families.

The Global Alliance for Genomics and Health (GA4GH) is an international, nonprofit alliance formed in 2013 to accelerate the potential of research and medicine to advance human health. Bringing together 500+ leading organizations working in healthcare, research, patient advocacy, life science, and information technology, the GA4GH community is working together to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. All of our work builds upon the Framework for Responsible Sharing of Genomic and Health-Related Data.