Canada Leads International Collaboration for Precision Healthcare Research for Autism

Vancouver, British Columbia [June 2, 2021] – Canada’s Digital Technology Supercluster and DNAstack today 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.

Autism, or autism spectrum disorder, refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication — each autistic person on the autism spectrum has a distinct set of strengths and challenges. There is not one autism but many subtypes, influenced by a combination of genetic and environmental factors. Autism affects approximately one in 66 Canadians.

Bien qu’une grande quantité de données génomiques et cliniques soit amassée dans le cadre de la recherche sur l’autisme, ces ensembles de données sont conservés indépendamment par les institutions afin d’en protéger la confidentialité et la sécurité. À ce jour, il a été difficile d’étudier ces données globalement, ce qui limite la capacité des chercheurs à mieux cerner les facteurs génétiques liés à l’autisme. Grâce à l’utilisation d’une technologie de pointe, l’initiative de partage des données sur l’autisme rendra possible une collaboration internationale entre institutions, permettant aux chercheurs d’investiguer et analyser simultanément de multiples ensembles de données anonymisées, sans déplacer les données de leur organisation d'origine. L'emplacement des données étant conservé, les niveaux de confidentialité et de sécurité seront maintenus, et les données seront accessibles selon le consentement du patient.

“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 Canada’s Digital Technology Supercluster. “This project is a great example of how Canada’s Digital Technology Supercluster is bringing together the global research community, and highlights Canada’s leadership in personalized approaches to care.”

Cette recherche est rendue possible par une nouvelle technologie qui repose sur la notion de « fédération de données », une technique qui permet d'effectuer des recherches et des analyses sur plusieurs ensembles de données, tout en laissant ces différents ensembles de données dans leurs environnements locaux protégés. Grâce à la mise en place de ce nouveau réseau mondial fédéré de partage de données génomiques, métaomiques cliniques, médicales, et centrées sur le patient et sa famille, les chercheurs et les professionnels de la santé seront en mesure de tirer parti de méthodes basées sur l'intelligence artificielle (IA) pour exploiter des ensembles de données complexes, ce qui pourrait permettre des diagnostics plus précoces et le développement d'approches de soins de précision pour les personnes autistes.

“Autism is complex and our research has demonstrated the value of connecting massive datasets to help us uncover critical genetic insights. While we have made great strides, there is still much we don’t know about the genetics of autism,” says Dr. Stephen Scherer, Director of The Centre for Applied Genomics (TCAG) at The Hospital for Sick Children (SickKids) and Lead Scientist of the Autism Speaks MSSNG program. “Each autistic person is unique and even siblings can have different forms of autism, underscoring the importance of studying individuals, families, and populations of people.”

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. This project would not be possible without autistic people and their families participating in research and the community will be able to engage to help maximize the value to autistic people. 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.”

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. The project is an $11.2 million initiative, including $4.3 million provided by Canada’s Digital Technology Supercluster. In addition to the core consortium, partners supporting this initiative include Holland-Bloorview Kids[4]  Rehabilitation Hospital, Ontario Brain Institute, and the Autism SPectrum Interdisciplinary REsearch (ASPIRE) Program at BC Children’s Hospital Research Institute.

Media Inquiries:
Jamil Karim

Interview opportunities with Sue Paish (CEO, Digital Technology Supercluster) and Marc Fiume (CEO, DNAstack) are available upon request.

About Digital Technology Supercluster:

The Supergrappe des technologies numériques solves some of industry and society’s biggest problems through Canadian-made technologies. We bring together private and public sector organizations of all sizes to address challenges facing Canada’s economic sectors including healthcare, natural resources, manufacturing, and transportation. Through this ‘collaborative innovation,’ the Supercluster helps to drive solutions better than any single organization could on its own.  The Digital Technology Supercluster is led by industry leaders such as D-Wave,  LifeLabs,  LlamaZOO, Lululemon, MDA, Microsoft Canada et NPower Canada feront aussi équipe avec Blueprint pour développer une feuille de route stratégique fondée sur des faits et analyser les retombées de l’initiative de l’ATTC pour les jeunes et les employeurs, et pour déterminer la meilleure façon d’étendre des éléments du programme en vue d’accroître son incidence à l’échelle du pays., Mosaic Forest Management, Sanctuary AI, Teck Resources Limited,  TELUS, Terramera, and 1Qbit. Together, we work to position Canada as a global hub for digital innovation. A full list of Members can be found ici

About the Technology Leadership Program: 

The Supercluster delivers three technology programs to enable wide-scale adoption of digital transformation platforms in key industrial segments and develop and commercialize new products, services and platforms. The suite of technology programs includes: Precision Health Program, Data Commons Program, and Digital Twins Program. These programs are core to the Supercluster securing Canada’s global leadership in digital innovation, and securing social and economic benefits for Canadians.

About DNAstack:

DNAstack’s mission is to improve the lives of millions of people by breaking down barriers to data sharing and discovery. DNAstack develops standards and technologies for scientists to more efficiently find, access, and analyze the world’s exponentially growing volumes of genomic and biomedical data. For additional support or partnership interest, please contact us by email to