Pillar 3: Patient-Centered Clinical Research

RARE.Qc structures its research activities around three complementary pillars designed to support the integrated development of rare disease research in Quebec. Together, these pillars aim to strengthen collaboration between institutions, optimize the use of existing resources, and accelerate the generation and sharing of knowledge within the scientific and clinical community. Each pillar is led by collaborative working groups bringing together diverse expertise and committed to implementing concrete initiatives that address the network’s priority needs.

We invite you to explore the objectives and initiatives of each of our pillars, as well as the members of the working groups who contribute their expertise to advancing the network’s goals.

The main objectives of Pillar 3 are as follows:

Harmonization of rare disease clinical trial approval processes, in collaboration with key stakeholders, to reduce barriers and accelerate approvals.
Facilitation of resource sharing and standardized operating procedures (SOPs) across institutions.
Strengthening patient recruitment and facilitating targeted patient referral.
Development of a framework to support pharmacoeconomic analyses and healthcare resource utilization studies.