RecruitingOBSERVATIONAL

Familial Hypercholesterolemia Canada / Hypercholesterolemie Familiale Canada

This initiative is creating a Canada-wide registry for Familial Hypercholesterolemia (FH), a common genetic condition where cholesterol levels are very high from birth. If untreated, it can lead to heart disease at a young age. The registry will collect health information and blood samples from people with FH across Canada. This will help doctors better understand the condition, connect people with specialist care, and improve treatment. Family doctors will be linked with expert centres, allowing them to better manage their patients and identify relatives who might also have FH (known as 'cascade screening'). The collected information, which will be kept anonymous for research, will help develop new treatments, inform healthcare policies, and ultimately improve the lives of people with FH in Canada.

At a glance

Status

Recruiting

Sponsor

McGill University Health Centre/Research Institute of the McGill University Health Centre

Enrolment target

6,000

Start

01 Nov 2013

Estimated completion

01 Nov 2028

Familial Hypercholesterolemia Lipid Disorder

What is this study about?

This study is setting up a special health record system, called a registry, for people in Canada who have a condition called Familial Hypercholesterolemia (FH). FH is a genetic condition, meaning it's passed down in families, that causes very high levels of 'bad' cholesterol (LDL-C) in the blood from a young age. If this condition isn't found and treated early, it can lead to serious heart problems, like heart attacks, much earlier in life than usual. The aim is to create a full picture of FH across Canada, which is the first step towards better care.

The registry will collect important details about people with FH, such as their health history, test results, and general information about them. It will also store blood samples for future research. This information will help doctors and researchers understand FH better, including how many people have it and how treatments affect them over time. By connecting family doctors with specialist centres, the project hopes to make sure that people with FH get the best possible care, and that their family members can also be checked and treated if needed.

Ultimately, this project is designed to improve the lives of people with FH in Canada. The information gathered will be used to guide general practitioners, support scientific studies on FH, influence healthcare decisions, and help develop new medicines. It has the potential to lead to significant benefits for patients, doctors, and the healthcare system as a whole.

Key takeaways

FH is a genetic condition causing very high cholesterol and early heart disease risk.
This registry aims to gather information to improve understanding and treatment of FH in Canada.
Data collected will be anonymised to protect participant privacy.
It will link local doctors with specialist centres for better patient care.
The findings could lead to new treatments and better healthcare policies for FH patients.
Participation will involve sharing your health information and possibly blood samples.

Who may be eligible?

This study is looking for people who have been diagnosed with Familial Hypercholesterolemia (FH).

To be eligible, you or your family usually need to have a history of high cholesterol or heart problems at a younger age. You might also have certain signs like fatty deposits around your eyes or on your tendons. Having very high levels of cholesterol or other fats in your blood also points towards FH.

There are no specific reasons given that would stop someone from joining this registry. It is open to people of all ages and both men and women.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do you have a diagnosis of Familial Hypercholesterolemia (FH)?
Do you or your family have a history of high cholesterol or early heart problems?
Have you had very high cholesterol or other fats in your blood tests?
Have you noticed any fatty deposits around your eyes or on your tendons?
Are you living in Canada and being treated for FH?

Answer every question to see your result.

What does participation involve?

If you join this registry, your doctors will share your health information, such as your medical history, cholesterol test results, and some details like your age and gender, with the registry. You might also be asked to provide blood samples (plasma/serum and DNA) for storage in a biobank, which means they'll be kept securely for future research. This is an ongoing registry, so information will be collected as part of your regular care, rather than specific study visits. There aren't specific medications given as part of this registry; it's about tracking existing care. The goal is to collect information over a long period to understand FH better.

Potential risks and benefits

Participating in this registry could help improve understanding of FH, leading to better care and the development of new treatments for people with the condition in the future. The main 'risk' is a small possibility of your anonymised health information being misused, though every effort is made to protect your privacy and keep your data secure. Providing blood samples involves a small needle stick. Remember, you can decide to stop participating and have your information removed from the registry at any time without affecting your medical care.

Locations (1)

Research Institute of the McGill University Health Centre: Glen site
Verified postcode
Montreal, Canada· Recruiting

Common questions

What is Familial Hypercholesterolemia (FH)?

FH is a common genetic condition that causes very high levels of 'bad' cholesterol (LDL-C) from a young age. If not treated, it can lead to heart disease early in life.

What is a patient registry?

A patient registry is a secure collection of health information from people with a specific condition. It helps doctors and researchers learn more about the condition and improve care.

Will my personal information be kept private?

Yes, for research purposes, your information will be 'anonymised,' meaning all details that could identify you personally will be removed to protect your privacy.

Do I have to take new medicine if I join?

No, joining this registry does not mean you will be given new medicines. It's about collecting information on how FH is currently treated and managed.

How will this study help people with FH?

By understanding FH better, the registry aims to improve treatment, guide doctors, influence healthcare policies, and potentially lead to new discoveries for better care for all FH patients.

How to find out more

Isabelle Ruel, PhD

isabelle.ruel@mail.mcgill.ca 514-934-1934 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.