UBC Faculty of Medicine researchers are part of a new national network that recently received $20 million in federal funding from the Canadian Institutes of Health Research Rare Disease Research Initiative for the creation of the RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network.
The new investment was announced by the Honourable Mark Holland, Minister of Health and supports the network which is led by Dr. Thierry Lacaze-Masmonteil and the Maternal Infant Child and Youth Research Network team.
The national network, which includes several researchers from UBC and the BC Children’s Hospital Research Institute, will foster collaboration among researchers, patients, caregivers, health-care providers, and policy makers to streamline clinical research and support national and international clinical trials to advance discoveries. This will help enable better prevention, diagnosis and treatments to improve health outcomes for children and adolescents affected by rare diseases.
In Canada, 14,000 children under the age of 15 die each year from a rare disease. With more than 7,000 known rare diseases, it is essential for researchers from across the country to work together to improve the health outcomes of all children and teens living with a rare disease.
“This new clinical network will be game-changing for the tens of thousands of Canadian children with a rare disease.”
Dr. Stuart Turvey
“This new clinical network will be game-changing for the tens of thousands of Canadian children with a rare disease,” says UBC professor Dr. Stuart Turvey, one of the researchers involved in the network. “By linking research hospitals across the country, including BC Children’s, we can diagnose and understand the diseases afflicting these children faster and develop the treatments they need sooner — saving more lives.”
Faculty of medicine researchers involved in the network include:
- Dr. Stuart Turvey, Professor, Division of Allergy and Immunology, Department of Pediatrics and BC Children’s Hospital Canada Research Chair in Pediatric Precision Health
- Dr. Quynh Doan, Associate Professor, Pediatric Emergency Medicine, Department of Pediatrics and Senior Executive Director, BC Children’s Hospital Research Institute, Clinician Scientist and Associate Dean, Research, BCCHR, UBC Faculty of Medicine
- Dr. Lori Tucker, Clinical Professor, Division of Rheumatology, Department of Pediatrics
- Dr. David Cabral, Clinical Professor, Division of Rheumatology, Department of Pediatrics
- Dr. Bhavi Modi, Research Associate, Department of Pediatrics and BCCHR
“As pediatric rheumatologists, all the children we care for have rare diseases, but finding new treatments has been very challenging,” says UBC clinical professor Dr. Lori Tucker. “We are excited to join the RareKids-CAN clinical trials network so that we can develop the critical support and infrastructure necessary to find those solutions for our patients.”
This investment was funded through the Canadian Institutes of Health Research Rare Disease Research Initiative, one of many initiatives funded through the Government of Canada’s National Strategy for Drugs for Rare Diseases.
“The creation of this network supports our government’s commitment to improving the lives of all patients living with a rare disease,” said the Honourable Mark Holland, Minister of Health.
“By bringing together rare disease pediatric community members from across Canada, modernized diagnosis and treatments will be made possible. Our government will support Canadian researchers as they continue to make remarkable contributions to health research to benefit not only Canadians, but rare disease patients around the world.”
A version of this story originally appeared on the BC Children’s Hospital Research Institute website.