The second edition of the Journée québécoise sur les sarcomes brought together healthcare professionals, researchers, and patients for a day dedicated to innovation and collaboration in sarcoma care. The event was a resounding success, drawing strong interest and support from the medical and patient community.
Our founders, Dr. Ramy Saleh and Dr. Jonathan Noujaim, presented the vision and progress of SaRC-Q (Sarcoma Research Consortium of Quebec), highlighting its mission, governance, and future direction.
Initially created to connect oncologists across Quebec and overcome silos, SaRC-Q has grown into a provincial hub for research, clinical trials, and patient support. Key milestones shared during the presentation included:
- Registry Achievements: SaRC-Q launched Quebec’s first centralized sarcoma database on REDCap, expanding from 206 patients at 12 sites in its first year to 687 patients across 15 sites by 2025. The registry tracks demographics, incidence, survival, and treatment trends.
- Accessible Clinical Trials: A centralized portal now connects patients and physicians to treatment options, growing from 2 trials at launch to 13 active trials today.
- Upcoming Amendments: Plans include pediatric patient inclusion, biobank integration, genomic data collection, and implementation of Law 5, which facilitates researcher access to medical data.
- Digital Education & Support: SaRC-Q is building strong patient resources and peer groups, including dedicated support for AYA and GIST patients.
- Governance & Structure: Led by a Board of Directors, Scientific Advisory Board, and operational team, SaRC-Q brings together medical experts, patient representatives, and industry stakeholders.
- Sustainability: The consortium is working toward long-term stability to expand its registry and research activities.
The presentations also sparked rich discussion around biobank standards, expanding patient representation, and future collaborations—both provincial and international.
Looking ahead, SaRC-Q aims to become a one-stop hub for research and innovation in sarcoma and to serve as a model for replication across Canada.
This event demonstrated not only the progress already made, but also the collective determination to improve outcomes and access to care for sarcoma patients in Quebec and beyond.
