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Familial hypercholesterolemia in Canada: Initial results from the FH Canada national registry

  • Liam R. Brunham
    Correspondence
    Corresponding author. University of British Columbia Centre for Heart Lung Innovation, Rm 166 - 1081 Burrard St, Vancouver, British Columbia, V6Z 1Y6, Canada.
    Affiliations
    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
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  • Isabelle Ruel
    Affiliations
    Research Institute of the McGill University Health Centre, Royal Victoria Hospital, Montreal, QC, Canada
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  • Etienne Khoury
    Affiliations
    Lipidology Unit, Community Genomic Medicine Centre and ECOGENE-21, Department of Medicine, Université de Montréal, Saguenay, QC, Canada
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  • Robert A. Hegele
    Affiliations
    Departments of Medicine and Biochemistry, Schulich School of Medicine and Robarts Research Institute, Western University, London, ON, Canada
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  • Patrick Couture
    Affiliations
    Lipid Research Centre, CHU de Québec-Université Laval, Québec City, QC, Canada
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  • Jean Bergeron
    Affiliations
    Lipid Research Centre, CHU de Québec-Université Laval, Québec City, QC, Canada
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  • Alexis Baass
    Affiliations
    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
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  • Robert Dufour
    Affiliations
    Nutrition, Metabolism and Atherosclerosis Clinic, Institut de recherches cliniques de Montréal, Department of Nutrition, Université de Montréal, QC, Canada
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  • Gordon A. Francis
    Affiliations
    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
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  • Lubomira Cermakova
    Affiliations
    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
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  • G.B. John Mancini
    Affiliations
    Department of Medicine, Division of Cardiology, University of British Columbia, Vancouver, BC, Canada
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  • James M. Brophy
    Affiliations
    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
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  • Dianne Brisson
    Affiliations
    Lipidology Unit, Community Genomic Medicine Centre and ECOGENE-21, Department of Medicine, Université de Montréal, Saguenay, QC, Canada
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  • Daniel Gaudet
    Affiliations
    Lipidology Unit, Community Genomic Medicine Centre and ECOGENE-21, Department of Medicine, Université de Montréal, Saguenay, QC, Canada
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  • Jacques Genest
    Correspondence
    Corresponding author. Research Institute of the McGill University Health Center, 1001 Decarie Blvd, Bloc E, Office EM12212, Montreal, Quebec, H4A 3J1, Canada.
    Affiliations
    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
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      Highlights

      • FH Canada has established a national registry across 19 academic sites acting as “hubs” in Canada.
      • 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.
      • FH Canada has developed a new, simplified Canadian definition of FH, and tools to aid in the diagnosis of FH.

      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.

      Keywords

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