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

Well-being, Health and Biomedical Discovery


Academic Unit: inquire with unit

Memorial Deadline: Thursday 2nd, November 2023

External Deadline: Tuesday 7th, November 2023


The current administrative coding system used in Canada, the International Classification of Diseases (ICD)-10-CA, only includes coding for a small fraction of the over 7000 known rare diseases. This prevents determination of the actual cost of diagnosis, care, and research of rare inherited diseases in Canada and impedes accurate estimation of the level of required investment. Retrospective studies from other countries suggest that rare/inherited diseases as a disease class currently account for the highest proportion of pediatric mortality and hospital bed occupancy, as well as the highest direct cost to the pediatric health care system.

To address this issue, the Orphanet Initiative developed the ORPHAcodes, a coding system that provides a unique identifier to each rare disease. In collaboration with Orphanet, the World Health Organization integrated the ORPHAcodes in the revision of ICD-10, resulting in the ICD-11 classification, which now allows tracking of rare diseases in administrative databases. However, this new system is not yet implemented in Canada.


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.

See ResearchNet for further information.

Funding Sources

Canadian Institute of Health Research (CIHR)

This opportunity was posted by: RGCS

Last modified: September 11, 2023