NONCOMPACT- International Consortium for Multimodality Phenotyping in Adults with Non-compaction
Brief description of study
This is a prospective, multicenter observational study to identify clinical, genetic and imaging predictors of clinical outcome in patients with suspected non-compaction cardiomyopathy
Many healthy people have increased trabeculations without consequences, however, some may develop blood clots, heart rhythm disorders or heart failure later in life. Currently we cannot predict who will develop these problems, and therefore we do not know which people with increased trabeculations would benefit from treatment to prevent these problems.
The purpose of this research study is to use imaging tests combined with genetics to identify patients with increased trabeculations who are at increased risk and might benefit from preventive measures. In this research study we will collect clinical information through questionnaires and from your charts. We will also use your echocardiogram and MRI scans for additional analyses to discover new characteristics and patterns.
Finally, we will collect the results of genetic test that may have been performed. These imaging tests and genetic tests have been performed as part of your clinical management, or some of the tests will be performed in the near future.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: cardiomyopathy
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Age: Between 18 Years - 99 Years
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Gender: All
Inclusion criteria: • Above 18 years of age • Hypertrabeculation of the left ventricle fulfilling the echo-based Jenni criteria of NCCM24 • Cardiac MRI examination performed or planned for clinical purposes
Exclusion criteria (Aim 1): • Complex congenital disease, neuromuscular disorders or isolated RV non-compaction • Inability to provide informed consent
Exclusion criteria to the cardiac CT exam (Aim 2): • Age less than 21 years • Decompensated heart failure, or otherwise clinically unstable • BMI>40 kg/m2 • Pregnancy (cannot be ruled out) • Known contrast medium allergy • Kidney dysfunction: eGFR<45 ml/min
• Thyroid disease: toxic multinodular goiter, Graves’ disease, Hashimoto’s thyroiditis
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