Canadian Registry for Familial Hypercholesterolemia and Rare Lipid Disorders A Nationwide Study to Improve Diagnosis, Treatment, and Research

What this Trial Is About

Researchers are establishing a Canada-wide registry for Familial Hypercholesterolemia FH, a common genetic disorder causing high levels of bad cholesterol and increasing early heart disease risk. This registry aims to gather clinical, biochemical, and demographic data on people with FH and other rare lipid metabolism diseases to improve care, support research, and inform health policies. The initiative also links primary care doctors with specialized centers across the country using a hub and spoke model to facilitate patient management and family screening. The registry collects patient information through local, provincial, and national databases. Local data is used by clinicians for patient care and family cascade screening, while provincial and national databases are anonymized for research and healthcare planning. Blood and DNA samples are collected for biobanking at individual sites. This setup supports ongoing clinical trials, novel therapies, and collaborative research among lipid specialists, endocrinologists, cardiologists, and researchers in health outcomes and economics. Participants provide consent and undergo clinical evaluation with baseline and yearly follow-up to capture health data and family history. The study tracks the number of FH patients registered and the prevalence rates across Canada. Patient care benefits from expert networks, while researchers gain access to de-identified data to study disease burden, treatment effects, and health economics. The registry also promotes knowledge sharing and training for healthcare professionals to improve FH management nationwide.

Familial Hypercholesterolemia Canada / Hypercholesterolemie Familiale Canada