Liam R Brunham1, Isabelle Ruel2, Etienne Khoury3, Robert A Hegele4, Patrick Couture5, Jean Bergeron5, Alexis Baass6, Robert Dufour7, Gordon A Francis8, Lubomira Cermakova8, G B John Mancini9, James M Brophy10, Dianne Brisson3, Daniel Gaudet3, Jacques Genest11. 1. Healthy Heart Program Prevention Clinic, St. Paul's Hospital, Department of Medicine, University of British Columbia, Centre for Heart Lung Innovation, Providence Health Care Research Institute, University of British Columbia, Vancouver, BC, Canada. Electronic address: liam.brunham@ubc.ca. 2. Research Institute of the McGill University Health Centre, Royal Victoria Hospital, Montreal, QC, Canada. 3. Lipidology Unit, Community Genomic Medicine Centre and ECOGENE-21, Department of Medicine, Université de Montréal, Saguenay, QC, Canada. 4. Departments of Medicine and Biochemistry, Schulich School of Medicine and Robarts Research Institute, Western University, London, ON, Canada. 5. Lipid Research Centre, CHU de Québec-Université Laval, Québec City, QC, Canada. 6. Division of Experimental Medicine and Medical Biochemistry, Department of Medicine, McGill University, QC, Canada; Nutrition, Metabolism and Atherosclerosis Clinic, Institut de recherches cliniques de Montréal, QC, Canada. 7. Nutrition, Metabolism and Atherosclerosis Clinic, Institut de recherches cliniques de Montréal, Department of Nutrition, Université de Montréal, QC, Canada. 8. Healthy Heart Program Prevention Clinic, St. Paul's Hospital, Department of Medicine, University of British Columbia, Centre for Heart Lung Innovation, Providence Health Care Research Institute, University of British Columbia, Vancouver, BC, Canada. 9. Department of Medicine, Division of Cardiology, University of British Columbia, Vancouver, BC, Canada. 10. Research Institute of the McGill University Health Centre, Royal Victoria Hospital, Montreal, QC, Canada; Department of Medicine, McGill University, Royal Victoria Hospital, Montreal, QC, Canada. 11. Research Institute of the McGill University Health Centre, Royal Victoria Hospital, Montreal, QC, Canada; Department of Medicine, McGill University, Royal Victoria Hospital, Montreal, QC, Canada. Electronic address: Jacques.genest@mcgill.ca.
Abstract
BACKGROUND AND AIMS: Familial hypercholesterolemia (FH) is under-diagnosed and under-treated in most of the world, including Canada. National registries play a key role in identifying patients with FH, understanding gaps in care, and advancing the science of FH to better treat these patients. METHODS: FH Canada has established a national registry across 19 academic sites acting as "hubs" in Canada to increase awareness and access to standard-of-care therapies. RESULTS: To-date, more than 3000 patients with FH have been entered into a secure, web-based database. Early outcomes of this initiative include a greater understanding of treatment gaps for patients with FH in Canada, the development of a new, simplified Canadian definition of FH, and tools to aid in the diagnosis of FH, including imputation of baseline levels of LDL cholesterol. CONCLUSIONS: As the national registry expands in size and scope, further learning will emerge with ultimate benefit for the diagnosis and treatment of FH in Canada.
BACKGROUND AND AIMS: Familial hypercholesterolemia (FH) is under-diagnosed and under-treated in most of the world, including Canada. National registries play a key role in identifying patients with FH, understanding gaps in care, and advancing the science of FH to better treat these patients. METHODS:FH Canada has established a national registry across 19 academic sites acting as "hubs" in Canada to increase awareness and access to standard-of-care therapies. RESULTS: To-date, more than 3000 patients with FH have been entered into a secure, web-based database. Early outcomes of this initiative include a greater understanding of treatment gaps for patients with FH in Canada, the development of a new, simplified Canadian definition of FH, and tools to aid in the diagnosis of FH, including imputation of baseline levels of LDL cholesterol. CONCLUSIONS: As the national registry expands in size and scope, further learning will emerge with ultimate benefit for the diagnosis and treatment of FH in Canada.