The network to advance research on rare diseases in Québec (RARE.Qc) is a Québec network funded by the Fonds de recherche du Québec – Santé (FRQS) and directed by Dr. Don Vinh of the Research Institute of the McGill University Health Centre (RI-MUHC). The network is dedicated to advancing research and innovation in the field of rare diseases by fostering collaboration between researchers, health professionals, institutions and government agencies. Its aim is to accelerate the development of treatments and improve understanding of these diseases through a platform for sharing knowledge, data and resources.
A strategic partnership to advance research
“This investment marks a key step in improving the data infrastructure for rare diseases. By collaborating with RARE.Qc, we are strengthening research capabilities and paving the way for significant advances for Québec patients.”
— Stéphanie Lord-Fontaine, Vice-President, Scientific Affairs, Génome Québec
A strong commitment from Génome Québec
Rare diseases are a strategic priority for Génome Québec. In partnership with the CHU Sainte-Justine, Génome Québec supports the Québec Genomic Data Centre (CQDG), a platform that harmonizes and disseminates genomic data from clinical and research studies in Quebec. The CQDG is working in collaboration with the Ministère de la Santé et des Services sociaux and the Réseau québécois de diagnostic moléculaire to develop the IT infrastructure needed to host data from clinical sequencing.
Investment to strengthen data infrastructure for rare diseases
Génome Québec’s investment will support the work of Vincent Ferretti, professor at the CHU Sainte-Justine Research Centre, to tailor/adapt the CQDG platform to the needs of RARE.Qc. This support will be used more specifically to:
- Ensure the secure hosting and sharing of genomic and clinical data of individuals living with a rare disease.
- Develop new functionalities for data analysis and exploration of biobanks.
- Set up a patient portal to facilitate the recruitment and consent of individuals living with rare diseases for clinical studies.
This partnership between Génome Québec, RARE.Qc and the FRQS is a major step to accelerate research into rare diseases. It establishes a world-class data infrastructure that will contribute to the development of more effective treatments and diagnostic tools.
To find out more about genomic initiatives for rare diseases: Rare Diseases | GénomeQuébec inc.
For more information about this announcement, we invite you to watch the concerned “Zebinar”!: