All for One Policy Toolkit

Principal Investigator: Bartha Maria Knoppers
Theme : Health
Competition : Genome Canada competition - Genomic Applications Partnership Program (GAPP)
Status : Completed
Start : Apr. 1, 2020
End: Mar. 31, 2023
Budget : $329,715.00

With rare diseases (RD), sufficient patient numbers are not available at any one site; data needs to be centralized, integrated and broadly accessible to drive RD research for gene identification and understanding. To do so, a broad, actionable and ethically grounded policy toolkit will be developed, and made available to the different All for One stakeholders, including institutions, and provincial and federal regulators. The development of these policy tools will require a 3-stage approach: 1) assessment of the RD policy ecosystem to identify commonalities, differences and limitations to inter-provincial data sharing; 2) consensus-building activities to identify the policy needs of the rare diseases research community; and 3) development of an overarching governance framework. Resulting resources aims to be interoperable and standardized to meet the needs of different clinical and research sites – for approval and use in the clinical implementation stage, as well as future sites. Though tailored to the rare disease clinical research community, the tools developed by All for One Policy Toolkitcan be adapted and used as models for more common diseases as precision medicine advances.

Lead Genome Centre: Génome Québec