Pre-announcement – Socioeconomic burden of inherited disease

Disclaimer: This draft version of the Research on the Socioeconomic burden of inherited disease funding opportunity is for your information only. The information contained herein is subject to change and does not commit the Canadian Institutes of Health Research to the requirements outlined in this version. The final funding opportunity will be published on the CIHR Funding Opportunity Database in ResearchNet in April 2019.

The Canadian Institutes of Health Research is pleased to announce the development of a Knowledge Synthesis Grant funding opportunity to support research on the socioeconomic burden of inherited diseases.

Inherited diseases, which are rare orphan diseases, are perceived as affecting only a few individuals. However, it is thought that 1 in 15 Canadian children is born with an inherited disease and approximately 30% of beds in pediatric hospitals are occupied by a child with an inherited disease.

Studies on the burden of inherited diseases are currently very complex as care is often provided by specialists, and these diseases are classified within a specific therapeutic area(s) rather than being recognized as the core cause, which is an inherited disease. This situation is exacerbated by the fact that the disease coding system mainly used worldwide, the International Classification of Diseases-10 (ICD-10), does not include specific coding for rare/inherited diseases. The current picture currently shows that collectively, inherited diseases are far from being rare and are indeed a major (if not the main) contributor to childhood mortality and morbidity in Canada.

Surprisingly, to-date, one aspect that has been under evaluated is the economic burden (direct costs and indirect costs) of rare diseases. Given the potentially high underestimated burden of inherited diseases on both morbidity and mortality for children, the goal of this Knowledge Synthesis Grant is to generate a clear picture of the burden of rare inherited diseases, with a focus on cost to the Canadian health care system. This will ultimately allow Canada and its provinces to collectively target efforts in an equitable manner, both at the individual and population levels, for inherited disease patients and their families.

The three main objectives of this Knowledge Synthesis Grant supporting the desired outcome are to:

  • Identify and synthesize existing data about the cost of treating inherited diseases;
  • Achieve a common understanding of the current knowledge gaps in this area;
  • Identify the best approach(es) to fill this gap

The total amount available for this opportunity is currently $200,000 over one year. The maximum amount per grant is $100,000 per year for up to 1 year.

Anticipated Timelines

Launch: April 2019
Application Deadline: September 2019
Notice of Decision: November 2019
Funding Start Date: December 2019

Contact information

Full program details will be available in the coming weeks. For questions about this strategic initiative and research objectives, please contact:

CIHR Contact Centre
Telephone: 613-954-1968
Toll Free: 1-888-603-4178

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