Notice of Upcoming Funding Opportunity: National Pediatric Rare Disease Clinical Trials and Treatment Network

This funding opportunity is now available on ResearchNet.

CIHR is pleased to provide information on an upcoming funding opportunity for the Network Grant: National Pediatric Rare Disease Clinical Trials and Treatment Network. This funding is a part of the National Strategy for Drugs for Rare Diseases and is supported through Federal Budget 2019.

CIHR will schedule a collaboration call with those who submit an Expression of Interest. Nominated Principal Applicant participation in the collaboration call is mandatory.


Rare Diseases (RDs) constitute an under-recognized global health priority. In fact, notwithstanding their name, RDs are far from rare. The population prevalence of RDs is reported at 3.5-6.0% and affect as many as 446 million people globallyFootnote 1. Taken collectively, these numbers would make “rare disease land” the world’s third most populous country.

Using current clinical diagnostic pathways, a RD takes an average of five years to diagnose, with 2-3 misdiagnoses prior to the correct diagnosis. This diagnostic odyssey, along with social isolation, an absence of care coordination and attendant socio-economic and mental health burdens are too often the norm for those living with RDs. Compounding the situation is the fact that more than two thirds of RDs have a pediatric onsetFootnote 1 Footnote 2 Footnote 3.

This funding opportunity will catalyze the creation of a clinical National Pediatric Rare Disease Clinical Trials and Treatment Network to streamline rare disease clinical research across the country and to facilitate the collaboration between researchers across pillars, people with lived and living experience (e.g., patients, family, caregivers, etc.), health care providers, industry, policy and regulatory bodies. This will maximize synergies to advance discovery across the rare disease continuum from prevention to diagnosis through to treatment and survivorship to improve health outcomes for children and adolescents affected by rare diseases. The aim is to bring together the current ecosystem of rare disease entities across the country under a common umbrella in a coordinated and synergistic way to support national and international clinical trials to rapidly advance discoveries to support young Canadians and their families.


The specific objectives of the National Pediatric Rare Disease Clinical Trial and Treatment Network funding opportunity are to:

  • Develop a platform to support pediatric rare disease clinical trials in Canada;
  • Increase the capacity to perform rare disease clinical trials in Canada;
  • Attract international clinical trials;
  • Foster diversity and inclusion in and improve access to clinical trials;
  • Implement processes to acquire data from clinical trials, real world registries, health economics evaluation, and post-marketing surveillance;
  • Increase the number of new rare disease drug submissions for authorization of commercialization to Health Canada.

Funds Available

Up to $20,000,000 over five fiscal years is available to fund one (1) Network grant.

Anticipated timeline

These timelines are estimates and subject to change

  • Program Launch: Summer 2023
  • Expression of Interest: Summer 2023
  • Collaboration Call: Late Summer 2023
  • Application Deadline: Fall 2023
  • Notice of Decision: Winter 2024
  • Funding Start Date: January 2024

Contact Information

For general inquiries please contact:

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


The information contained herein is anticipatory only and does not represent an official funding commitment by the Canadian Institutes of Health Research. Accordingly, the information contained herein may differ from the official funding opportunity that will be published on ResearchNet.

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