Registry for Familial Hypercholesterolemia in Canada
Familial Hypercholesterolemia Canada / Hypercholesterolemie Familiale Canada
McGill University Health Centre/Research Institute of the McGill University Health Centre · NCT02009345
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 |
|---|---|
| Enrollment | 6000 (estimated) |
| Sex | All |
| Sponsor | McGill University Health Centre/Research Institute of the McGill University Health Centre (other) |
| Locations | 1 site (Montreal, Quebec) |
| Trial ID | NCT02009345 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: Similar registries in countries like the Netherlands and the UK have shown success in improving treatment outcomes for familial hypercholesterolemia.
Eligibility criteria
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 this trial is running
Montreal, Quebec
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Familial Hypercholesterolemia, Lipid Disorder, Familial hypercholesterolemia,, High LDL-cholesterol, Registry, Coronary artery disease