Pillar 1 aims to better connect data and resources from rare disease research across Québec, making them more accessible and usable for the scientific community. This pillar will enable researchers to work with harmonized datasets that are more complete and representative.

This approach allows for a better characterization of the epidemiology of rare diseases in Québec, particularly by documenting their prevalence, distribution within the population, and evolution over time, through the use of large-scale longitudinal data.

By making these resources easier to identify and use, Pillar 1 supports more robust research, accelerates collaboration, and enables full use of existing data and biospecimen-related information.