OTTAWA, January 23, 2018 – CHEO research in rare diseases, inflammatory bowel disease and childhood arthritis is being supported with new funding from Genome Canada and the Canadian Institutes of Health Research (CIHR). This new funding will allow researchers to expand their important work in improving the lives of children at CHEO, across the country and around the world.
The CHEO Research Institute, affiliated with the University of Ottawa, is home to Care4Rare Canada and research into the more than 7,000 rare genetic diseases that have a devastating impact for the estimated one million Canadians and their families who are affected. The genetic cause is unknown for one-third of rare diseases (i.e., the rare disease is unsolved), preventing accurate diagnosis and informed care. With almost $13 million in funding, the Harnessing multi-omics to deliver innovative diagnostic care for rare genetic diseases in Canada (Care4Rare-SOLVE) project will work to identify the genetic causes of unsolved rare diseases and make genomic sequencing available to Canadians for diagnosis.
“When a child is sick, his or her family and care providers want to know as early as possible the cause of the child’s challenges so they can manage them effectively. When the disease is rare, it is difficult to optimize disease management,” says Dr. Kym Boycott, Senior Scientist at the CHEO Research Institute, Professor of Pediatrics at University of Ottawa and global expert in rare disease diagnosis. “With this new funding from Genome Canada and CIHR, we will be working with other centres across Canada to more than double our current ability to diagnose unsolved rare disease as well as build the infrastructure and tools needed to improve rare disease diagnosis worldwide.”
For Christine Dalgleish, this funding dramatically increases the possibility of finding someone else with the same diagnosis as her daughter. Seven-year-old Abby has a gene mutation so rare she’s currently the only known case in the world. “Undiagnosed rare disease is really scary. Diagnosing children faster means less stress on families, fewer tests for kids, better treatment options and so much less time wasted chasing dead ends,” says Ms. Dalgleish. “This funding gives us hope that one day we’ll be able connect with another child with the same rare disease as Abby, to have the opportunity to share our experiences, and really just to know we’re not alone."
The CHEO Research Institute will work with co-leads at the Hospital for Sick Children, the University of Calgary and the University of British Columbia on Care4Rare-SOLVE. Physicians and researchers from across Canada will share data with Care4Rare-SOLVE to provide all Canadians with rare disease the hope of an accurate diagnosis and better care.
In addition, CHEO will co-lead the Microbiome-based precision medicine in inflammatory bowel disease (IBD). Canada has one of the highest rates of IBD in the world, with an estimated 233,000 patients, including 5,900 children. Researchers Dr. David Mack at CHEO and Dr. Alain Stintzi at the University of Ottawa will study functional outcomes of the altered intestinal microbes present in IBD patients.
“Treatment of IBD can be unpredictable. If we treat patients too aggressively, we risk doing more harm than good; not enough and it’s not effective,” says Dr. Mack. “We are aiming at using a personalized approach based on combining knowledge about the genomics and biological consequences to design simple and quick tests to reveal the optimal treatment for each affected patient, allow for personalized treatment plans and more easily monitor and modify treatment plans if needed.”
The $9.1 million project will set the stage for future clinical trials aimed at restoring IBD patients’ microbes to a healthy state.
“Not only does IBD prevent patients from living their lives to the fullest, holding children back from school and play and keeping adults away from work and family life, it is estimated to cost the Canadian economy about $2.8 billion a year in lost wages and productivity and treatment costs,” says Dr. Stintzi. “With this funding, we hope to not only have a positive impact on the lives of patients but also realizing a reduction in economic consequences.”
This project will work with researchers at The Ottawa Hospital and its Research Institute, BC Children’s Hospital and University of British Columbia, St. Justine’s Children’s Hospital in Montreal and its Research Center, and University of Guelph.
The CHEO Research Institute will also be involved in a project being led by researchers at the Hospital for Sick Children in Toronto. Dr. Ciaran Duffy, CHEO Chief of Pediatrics and Professor and Chairman, Department of Paediatrics, Faculty of Medicine, University of Ottawa, will contribute to UCAN CURE: Precision decisions for childhood arthritis. For more than 24,000 children in Canada who live with pain of arthritis, this new funding will potentially mean faster and more customized access to biologics, a class of powerful drugs that can dramatically reduce joint inflammation and pain.
These three projects are part of the Large-Scale Applied Research Project Competition: Genomics and Precision Health announced in Toronto today by the Honourable Kristy Duncan, Minister of Science.
“Genomics and the ability to study the genetic information of a patient are increasing our ability to provide better care for children and families. Not limited to just one area of care, genomics is allowing us to make life-changing discoveries across many childhood diseases” says Dr. Martin Osmond, CEO of the CHEO Research Institute. “With this funding, the CHEO Research Institute will accelerate pediatric health research across a range of specialties, improving quality of life for families.”
About the CHEO Research Institute
The CHEO Research Institute coordinates the research activities of the Children’s Hospital of Eastern Ontario (CHEO) and is affiliated with the University of Ottawa. Its three programs of research include molecular biomedicine, health information technology, and evidence to practice research. Key themes include cancer, diabetes, obesity, mental health, emergency medicine, musculoskeletal health, electronic health information and privacy, and genetics of rare disease. The CHEO Research Institute makes discoveries today for healthier kids tomorrow.
About the University of Ottawa
The University of Ottawa is home to over 50,000 students, faculty and staff, who live, work and study in both French and English. Our campus is a crossroads of cultures and ideas, where bold minds come together to inspire game-changing ideas. We are one of Canada’s top 10 research universities—our professors and researchers explore new approaches to today’s challenges. One of a handful of Canadian universities ranked among the top 200 in the world, we attract exceptional thinkers and welcome diverse perspectives from across the globe. www.uottawa.ca
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