Team Grant: Improving Health and Administrative Data and Monitoring for Rare Diseases

The purpose of this funding opportunity is to support implementation research to determine the prevalence, direct cost, and burden of rare diseases in the Canadian health care systems. This effort will enable prospective research for patients in Canada by allowing their identification in the administrative databases. It is expected that the new knowledge generated through this funding opportunity will lead to more accurate and equitable partitioning of resources (e.g., diagnosis, treatment, research, indirect support for patients and families), based on the burden of rare diseases and impact on the health care system, patients, and their families. Importantly, the funded research will inform the required adaptations to the administrative coding system used in Canada to appropriately capture rare diseases data.