The BC-based Digital Technology Supercluster and DNAstack recently announced the Autism Sharing Initiative, a new project to build the first federated, global network for sharing genomics and clinical data to accelerate research with the hopes of developing precision healthcare approaches for autistic individuals.

The project is an $11.2 million initiative, including $4.3 million provided by Canada’s Digital Technology Supercluster.

Why it matters: While a great deal of genomic and clinical data are currently being collected in autism research, these datasets are maintained independently by institutions to protect privacy and data security. To date, it has been difficult to study these data together, limiting researchers’ ability to better understand the genetic factors involved in autism.

Using new technology, the Autism Sharing Initiative will enable international collaboration between institutions, allowing researchers to search and analyze multiple de-identified datasets at the same time, without moving the data from its original organization. Because the location of the data is maintained, the levels of privacy and security will be maintained, and data will be accessed according to patient consent.

View from the top: “Through leading international collaborations such as the Autism Sharing Initiative, we are fuelling the growth of Canada’s digital ecosystem, driving Canadian innovation, and supporting research to help families living with autism in Canada and around the world,” said Sue Paish, CEO of the Digital Technology Supercluster.

Details: The research in question is enabled by new technology based on the concept of “data federation,” a technique that allows search and data analysis to be performed across multiple datasets while allowing the individual datasets to remain in their protected local environments.

Through building this new federated global data-sharing network, researchers and healthcare professionals will be able to leverage AI-based methods to mine complex datasets, which could enable earlier diagnoses and the development of precision healthcare approaches for autistic people.

The Autism Sharing Initiative builds on research through the work of a consortium that includes Autism Speaks, Autism Speaks Canada, DNAstack, Excelar Technologies, McGill University’s Centre of Genomics and Policy, Molecular You, Pacific Autism Family Centre Foundation, Hoffmann-La Roche Limited (Roche Canada), SickKids and the University of British Columbia.

In addition to the core consortium, partners supporting this initiative include Holland-Bloorview Kids Rehabilitation Hospital, Ontario Brain Institute, and the Autism SPectrum Interdisciplinary Research (ASPIRE) Program at BC Children’s Hospital Research Institute.

Outcomes: The Autism Sharing Initiative will develop new easy-to-use software that allows institutions to independently manage data but virtually integrate them over distributed networks. Powered by implementations of the latest open standards developed by the Global Alliance for Genomics & Health, the software securely shares all data, allowing researchers to bring their best ideas forward in the most efficient and careful manner. Enabling scalable federated analysis and machine learning could fuel new research discoveries that could have broad impact for collaborative genomics research beyond autism.

“Understanding autism requires a collaborative and globally representative ecosystem”, said Dr. Marc Fiume, CEO of DNAstack. “The siloed nature of individual research and clinical datasets is a fundamental roadblock to realizing the promise of data-driven personalized healthcare. Recent advances in generating international standards for data sharing enable the  value of data to be unlocked while protecting privacy, which promise to transform biomedical  research and translation into clinical care.”