DZHK TORCH-Plus is a Registry for Patients With Cardiomyopathies and Serves as Source for Cardiovascular Research Studies

Study Overview
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Brief Summary
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The DZHK TranslatiOnal Registry for CardiomyopatHies (DZHK TORCH) represents a unique resource of clinical data and high quality biological samples to enable innovative clinical and molecular studies on cardiomyopathies (CMP). As a multi-center German cardiomyopathy registry, TORCH has been prospectively admitting patients since December 2014. 2,300 patients were recruited as planned. Taken together, patient data showed that the prevalence of these diseases is much higher in men than in women, atrial fibrillation is common in all forms of CMPs as well as rare forms of disease indicate a higher risk and higher morbidity. This DZHK TORCH register is now to be expanded with a second phase (DZHK TORCH-Plus). The second phase DZHK TORCH-Plus consists of 4 main modules: 1. Clinical phenotyping, follow-up & biosampling 2. Genomics, 3. Inflammation and 4. Biomarker. The central aims are 1) to significantly increase the number of probands (n = 4340) in order to better address the different types of CMPs, especially patients with rare CMP forms such as LVNC and ARVC or with probably molecularly explainable cardiomyopathies (familial DCM), 2) to prolong the longitudinal with a further follow-up to achieve sufficient events and thereby derive clinical recommendations for risk assessment, 3) to increase the number of probands with state-of-the-art phenotyping, 4) to pinpoint the effect of myocardial inflammation, fibrosis, gender and to determine or predict genotypes based for outcome, 5) to validate novel biomarkers developed in other DZHK studies, and 6) to foster active cooperation with international CMP registries and partners from industry.

Official Title
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TranslatiOnal Registry for CardiomyopatHies (TORCH) - Plus as Part of the German Centre for Cardiovascular Research (DZHK)

Conditions
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Amyloidosis, Non-ischemic Cardiomyopathy, DCM - Dilated Cardiomyopathy, HCM - Hypertrophic Cardiomyopathy, HOCM - Hypertrophic Obstructive Cardiomyopathy, Arrhythmogenic Right Ventricular Cardiomyopathy, Left Ventricular Noncompaction Cardiomyopathy, Inflammatory Cardiomyopathy

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Non-ischemic structural cardiomyopathies Age ≥ 18 or ≤ 80 years The patient is able to understand the declaration of consent and to sign it dated At least one of the following diagnoses depending on the specific TORCH- Plus inclusion / exclusion - SOP: Dilated Cardiomyopathy (DCM) family / genetic inflammatory / persistent myocarditis idiopathic (after exclusion secondary cause) left sided systolic dysfunction (EF ≤ 45%) Left ventricular hypertrophy sarcomere hypertrophic cardiomoypathia (HCM, HOCM) amyloid (AL: light chains, TTR: transthyretin, wild type) Left ventricular non-compaction cardiomyopathy (LVNC) Arrhythmogenic right ventricular cardiomyopathy (ARVC / D) Exclusion Criteria: The following exclusion criteria have been defined and must be taken from the TORCH-Plus specific inclusion / exclusion - SOP in detail: Age: <18 years or> 80 years Patient has other (cardiac) previous illnesses: uncontrollable arterial hypertension primary pulmonary arterial hypertension radiation therapy in the chest area addiction (drug or alcohol abuse) life expectancy <1 year due to non-cardiological pre-existing conditions significant heart valve disease ischemic diseases and severe congenital heart diseases (including VSD, Fallot tetralogy, Ebstein anomaly) chemotoxic cardiomyopathy condition after myocarditis combination of several traditional risk factors (e.g. hypertension and diabetes mellitus) advanced chronic non-cardiac disease (e.g. chronic hepatitis or HIV) Tachymyopathy

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 80 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| all-cause mortality |  | 4 years | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Cardiomyopathies, registry, data, biomaterial, genetics