ASCVD Inclisiran Feedback

Introduction

IMPORTANT DEADLINE: Please complete AS SOON AS POSSIBLE or no later than 10 July 2023. Your responses will support the submission of the Canadian Heart Patient Alliance to the Canadian agencies assessing drugs for inclusion in public drug plans. The drug under assessment is a novel PCSK9 inhibitor, inclisiran. Patient groups have the opportunity to make a written submission as part of the review process. Our deadline for submission is 14 July 2023.

This survey is being conducted by the FH Canada Patient Network (FH-CPN) and seeks feedback from persons or caregivers of persons diagnosed with or at high risk for Atherosclerotic Cardiovascular Disease (ASCVD), also known as Coronary Artery Disease (CAD), Coronary Heart Disease (CHD), Ischemic Heart Disease (IHD). Persons with ASCVD typically have high levels of (bad) "low-density lipoprotein cholesterol" or LDL-C.

We are seeking feedback on your experience of living with ASCVD, how it affects you, your work, and your family life. We also want to know about any treatments you have received, now or in the past. We especially want feedback from patients who have or are currently receiving plasmaphereis, apheresis, statins, ezetimibe, any PCSK9 inhibitor, evolocumab (Repatha) or alirocumab (Preluent), and/or the RNA molecule inclisiran (Leqvio).

Your answers are confidential and no personally identifiable information will be shared with your healthcare provider, your insurance plan, workplace, or any other entity. Your responses will be summarized as part of the submission by FH-CPN to the Canadian Agency for the Review of Drugs and Technologies in Health (CADTH) and Quebec's Institut national d’excellence en santé et en services sociaux (INESSS) . No individually identifiable information will be submitted.

Question Title

* 1. Describe, in your own words, how living with cardiovascular disease has affected you currently or in the past. Has your condition affected your work, school, social and/or family life? How have concerns about the possible consequences of cardiovascular disease affected you or your family?.

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* 2. Atherosclerotic cardiovascular disease (ASCVD) is caused by the build up of deposits of fat or lipid (including cholesterol) in the arteries, reducing blood flow to the heart.

Lipid disorders leading to ASCVD may be inherited or acquired.

Which of the following describes your diagnosis or the diagnosis of the person you care for related to ASCVD?

PLEASE CHECK ALL STATEMENTS THAT APPLY.

Have received a diagnosis of ASCVD (coronary or ischemic disease)

Have symptoms or OR high "Risk Assessment" for ASCVD

Have experienced a heart attack or stroke

Have been diagnosed with familial (inherited) cholesterol

Diagnosed with or symptoms of OTHER lipid disorders (dyslipidemia, hyperlipidemia, high triglycerides)

None of the above

Other (please specify)

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* 3. What is your age category or the age category of the person with Familial Hypercholesterolemia for whom you provide care?

Under 19 years of age

20 to 29 years of age

30 to 39 years of age

40 to 49 years of age

50 to 59 years of age

60 - 69 years of age

Over 70 years

Other