Genome Canada Creates Rare Disease Pilot to Serve as Foundation for Precision Health Initiative

Rare Daily Staff

Genome Canada has launched a national initiative for the clinical implementation of precision health with a pilot program focused on rare disease patients.

Under the program, Health Canada is establishing shared policies, processes, techniques, and technologies to improve the diagnosis and treatment of rare disease patients. The pilot plan will form the first step towards a national roll-out of precision health for all Canadians. Genome Canada’s President and CEO Marc LePage announced the program during a session at the BIO International Convention 2018 in Boston, Massachusetts.

“Precision health built on genomics and other technologies promises the unprecedented ability for diagnostic precision and timeliness as well as the opportunity to discover new disease mechanisms and treatments,” said LePage. “Our rare disease pilot initiative aims to directly help thousands of Canadian patients and their families, while laying the foundation for better health outcomes for all Canadians.”

The pilot initiative features three main components. It will include a national rare disease cohort of 30,000 rare disease patients and their families, who will be sequenced.

In addition, Health Canada is establishing a national platform to provide mechanisms and best practices for the collection of sharing data. This will include the establishment of privacy policies, informed consent, and other ethical and legal frameworks.

Health Canada will also seek to advance clinical implementation by working with provincial and regional centers and partners to establish clinical sites and achieve regulatory approval and accreditation.

As part of the rare disease pilot program, Genome Canada has established an advisory committee comprised of rare disease researchers, clinicians, patient advocates, policy and ethics experts, and others.

June 5, 2018
Photo: Marc LePageGenome Canada’s President and CEO