Contest : Funding Opportunity: Collaboration in the funding of the Quebec Network for Rare Disease of the Fonds de Recherche du Québec – Santé (FRQS)
RARE.Qc is a Quebec-based network focused on advancing research and innovation in the field of rare diseases. Its primary goal is to foster collaboration between researchers, healthcare professionals, institutions and government agencies to accelerate the development of treatments and improve understanding of rare conditions. The network provides a platform for sharing knowledge, data, and resources, facilitating interdisciplinary partnerships to address the unique challenges posed by rare diseases. The network is committed to driving progress through collective expertise and to contribute to the development of more effective therapies and diagnostic tools for rare diseases in Quebec and beyond.
Pillar 1 of the RARE.Qc network aims to facilitate the secure, collaborative, user-friendly, and productive sharing of samples and clinical and genomic data from individuals living with rare diseases. To achieve this goal, the platform of the Quebec Centre for Genomic Data (CQDG) will host the network’s data and be adapted to meet its specific needs. More specifically, the team will implement new features in the platform to integrate new types of data and enable the exploration of sample biobanks contents to facilitate rare disease research. A data registry for the epidemiological study of rare diseases will also be created. Additionally, data from the Quebec Molecular Diagnosis Network (RQDM) will be integrated into the CQDG platform to make it accessible to researchers. Finally, a patient portal will be established to allow patients to register and manage their consent to the registry, thereby facilitating the recruitment and consent of individuals with rare diseases for clinical studies.