Registry for Familial Hypercholesterolemia in Canada
Official title: Familial Hypercholesterolemia Canada / Hypercholesterolemie Familiale Canada
Run by McGill University Health Centre/Research Institute of the McGill University Health Centre · NCT02009345 · Data updated 2026-11-12
This study is setting up a registry for people with familial hypercholesterolemia in Canada to help doctors manage their care and support research on this genetic condition.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 6000 (estimated) |
| Sponsor | McGill University Health Centre/Research Institute of the McGill University Health Centre Academic / other |
| Locations | 1 site (Montreal, Quebec) |
| Status | Recruiting |
| Started | November 2013 |
| Main results expected | November 2025 |
| Study ends | November 2028 |
| Registry record updated | October 4, 2023 |
| Trial ID | NCT02009345 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry include individuals with a clinical diagnosis of familial hypercholesterolemia, characterized by high cholesterol levels and a family history of heart disease.
✕Probably not a fit
Patients without a family history of high cholesterol or heart disease, or those not meeting the clinical diagnostic criteria for FH, may not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This initiative aims to create a comprehensive registry for individuals with familial hypercholesterolemia (FH) across Canada, which is a genetic disorder leading to high cholesterol levels and increased risk of coronary artery disease. The registry will collect clinical, biochemical, and demographic data, along with biological specimens for future research. It employs a 'hub and spoke' model to connect primary care physicians with academic centers, facilitating patient management and cascade screening for relatives. The anonymized data will also support collaborative studies in various health-related fields.
Why it matters
Potential benefit: If successful, this registry could significantly improve early diagnosis and treatment of familial hypercholesterolemia, potentially reducing cardiovascular disease risk in affected individuals.
How similar studies have gone: Similar registries in countries like the Netherlands and the UK have shown success in improving treatment outcomes for familial hypercholesterolemia.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnostic criteria for FH, which are: * Family and/or personal history of high cholesterol * Family and/or personal history of heart disease * Abnormal growth on tendons, accumulation of fatty material in the eye * Family history of FH * Severe disorder of cholesterol and other lipids in the blood Exclusion Criteria: No exclusion criterion
Where it's running
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Research Institute of the McGill University Health Centre: Glen site
Montreal, Quebec, Canada Recruiting
Study contacts
- Principal investigator: Jacques Genest, MD — Research Institute of the McGill University Health Centre
- Study coordinator: Isabelle Ruel, PhD
- Email: isabelle.ruel@mail.mcgill.ca
- Phone: 514-934-1934
Similar studies
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.