A coalition of researchers and healthcare providers in Canada and beyond are building what they believe to be the first global, federated network for sharing genomics and clinical data to support advances in research and patient care for autism (Subscriber content).
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.
The Government of Canada is investing up to $950 million over five years to support industry-led innovation superclusters across the country and accelerate economic growth, productivity, and competitiveness across five Superclusters.
The Global Alliance for Genomics and Health (GA4GH) proposes a data access policy model—“registered access”—to increase and improve access to data requiring an agreement to basic terms and conditions, such as the use of DNA sequence and health data in research.
The volume of genomics and health data is growing rapidly, driven by sequencing for both research and clinical use.
We fundamentally believe that democratization of genomics information through sharing will massively accelerate discoveries that will lead to better treatments and outcomes for patients affected by genetic diseases.
Data Sharing as a National Quality Improvement Program: Reporting on BRCA1 and BRCA2 Variant-Interpretation Comparisons Through the Canadian Open Genetics Repository (COGR)
The purpose of this study was to develop a national program for Canadian diagnostic laboratories to compare DNA-variant interpretations and resolve discordant-variant classifications using the BRCA1 and BRCA2 genes as a case study.
Early data-sharing efforts have led to improved variant interpretation and development of treatments for rare diseases and some cancer types.
The Can-Share program seeks to build policies and data tools to share data among Canadian research institutions and with international partners.
Through its Data Working Group, GA4GH wants to replace many existing standards, conventions, and file formats with new ones that will scale to searching through genomes at the level of whole populations ― and, crucially, make it easier for separate organizations to share data.