Grant: Planning and Dissemination Grant - Institute Community Support

Mitochondrial diseases are a group of genetic disorders that are individually rare but collectively affect more than 4,000 Canadians. Individuals with mitochondrial disease and their families face important challenges associated with rare disease care, including diagnostic delays, barriers to accessing coordinated specialist care, and a scarcity of strong evidence to guide treatment decisions. Currently in Canada there is no established network that can launch a national coordinated program of research toward improved care and health for patients with mitochondrial disease. We propose a two-day, multi-stakeholder research workshop that will bring together patients and families, health care providers, and researchers from across Canada to partner in the establishment of a Canadian research network (MitoNET.ca) and research agenda to improve health care and outcomes for patients with mitochondrial disease. Recognizing the importance of partnership, we will invite approximately 15 presenters and panelists to the workshop, at least 5 of whom will be patients with mitochondrial disease or their family members. Up to 50 in-person workshop attendees and many more virtual participants will be accommodated. Post-workshop activities will include a workshop report suitable for peer-reviewed open access publication; a research network website, to be hosted by MitoCanada; and implementation of the research agenda we create. Through coordinated Canadian research that emphasizes patient priorities, ultimately we aim to improve health care and health outcomes for people with mitochondrial diseases.