Non-ischemic Cardiomyopathy Registry, Biobank and Imaging Data Repository

Recruiting now

Conditions studied: Non-ischemic Cardiomyopathy

In brief

The main goal of CaNICM is to create a central database that includes a biobank and an imaging data repository for patients with non-ischemic cardiomyopathy (NICM), as well as for at-risk family members. This includes people who carry rare genetic variants linked to NICM but do not show symptoms, and first-degree relatives. The specific goals of this database and biobank are to: Enhance investigators' ability to predict the risk of heart rhythm disorders in patients with NICM. Optimize the timing and approach for screening family members who may carry the disease - determining who to test, when, and how. Find the best ways to treat family members early to prevent or slow the disease. Future Phase - Phase 2 Goal: 4\. Prospectively evaluate how well this risk prediction model works in real-life clinical settings, and compare it to the current approach, which is often based on a single risk factor.

Key facts

Study ID

NCT07110818

Run by

Montreal Heart Institute

People needed

2000

Starts

2024-04-02

Expected to finish

2031-04-01

Last updated by the study team

2025-08-13

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• LVEF <50% and/or
• LVEF 50-55% with presence of clinically significant late gadolinium enhancement or LV dilatation and being carrier of a non ischemic cardiomyopathy causing gene (Pathogenic or likely pathogenic variant in a Clingen moderate or definite gene)

You may not qualify if…

• A significant other cause of decreased LVEF such as:
• Coronary artery stenosis (Significant lesion on proximal Left anterior descending or Left main, or ≥2 main branches with stenosis. Significant lesion is defined as >70% of any artery or >50% for the left main artery) or prior history of type 1 myocardial infarction
• Significant congenital heart disease requiring intervention
• Primary valvular disease including moderate to severe aortic stenosis and moderate to severe mitral stenosis, primary severe mitral regurgitation (secondary valvular disease such as mitral regurgitation/tricuspid regurgitation are not exclusion criteria)
• Other distinct entities: Amyloid heart disease, Chagas, Takotsubo, sarcoidosis, hemochromatosis related cardiomyopathy, HIV related cardiomyopathy are excluded
• Substances/therapies induced cardiomyopathy only if they are deemed to be the sole explanation for the cardiomyopathy (at the discretion of the enrolling cardiologist)
• Clear history of burned out hypertrophic cardiomyopathy
• Already had a transplantation at time of first CMR
• Refusal to provide informed consent
• Additional remarks:
• Patients aged > 70 years of age at first contact with a cardiologist regarding the cardiomyopathy will be limited to maximum 10% of the total enrolled patients by center.
• Patients with risk factors (for example, chemotherapy, radiotherapy, alcohol…) for cardiomyopathy are not excluded unless they are deemed to completely account for the phenotype per the treating physician.
• The inclusion is not restricted to adult patients and is planned to be extended to the pediatric population.
• All included patients are recommended to have a CMR performed within 3 years of inclusion.

Where it is running

• Montreal Heart Institute — Montreal, Quebec, Canada (enrolling)

Full record on ClinicalTrials.gov

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