Genome Canada has launched a national initiative for the clinical implementation of precision health, focusing on a rare disease pilot program as a foundational step. This initiative features three main components:
A national rare disease cohort is envisioned to be established through the collection and sequencing of 30,000 samples from rare disease patients and their families.
A national platform is being set up to provide mechanisms and best practices for the collection and sharing of data, including privacy policies, informed consent and other ethical and legal frameworks.
Clinical implementation will advance through working with provincial and regional centres and partners to establish clinical sites and achieve regulatory approval and accreditation.
In order to initiate this ambitious program, Genome Canada is encouraging the submission of projects to the Genomic Applications Partnership Program (GAPP) that will translate research into clinical implementation with the goal of having genome sequencing offered as a clinical genetic test within an established diagnostic and clinical care pathway for rare diseases. The other activities in the Precision Health Initiative – Rare Diseases will be advanced through other funding mechanisms.