Autism Sharing Initiative
Building the first federated and fully-protected global network for sharing genomics and biomedical data to accelerate research and develop precision healthcare approaches for individuals with autism.
Project Overview
Updated March 31, 2023
The Problem
Over the past 20 years, more and more people have been diagnosed with neurodevelopmental conditions.
One in 66 Canadians are diagnosed with autism spectrum disorder (ASD) – comprising a community with distinct sets of both strengths and challenges. ASD refers to a broad range of conditions characterized by social, communication, motor and learning skill differences with underlying genetics of the condition varying even within single families. There is not one autism but many subtypes, influenced by a combination of genetic and environmental factors. These differences can present challenges in the diagnoses, treatment and management of health issues those with ASD experience.
How We Are Solving It
The Autism Sharing Initiative aims to build on Canada’s leadership in autism research and unite the world’s most ambitious efforts, to build the first federated global network for sharing genomics and biomedical data to accelerate research with the hopes of developing precision healthcare approaches for autistic individuals.
While a great deal of genomic and clinical data are 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.
This research 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 of genomics, multi-omic clinical, medical, patient and family-centered data, researchers and healthcare professionals will be able to leverage artificial intelligence (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 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.
The Result
This project created the first federated and privacy-preserving global network for sharing genomics and biomedical data to accelerate research and develop precision healthcare approaches for autistic individuals. The project built the technical infrastructure to support data sharing, collect new data samples, and foster alignment on data sharing policies and procedures. It ultimately enabled the development of DNAstack’s Neuroscience AI, a new federated platform for collaborative neuroscience research. Multiple project partners have either connected their data to the network or are planning to.
Project Lead
Project Partners
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“Understanding autism requires a collaborative and globally representative ecosystem. 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.”
CEO, DNAstack Read the Announcement (June 2021)