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Hypertrophic Cardiomyopathy Registry: The rationale and design of an international, observational study of hypertrophic cardiomyopathy.
- Source :
-
American heart journal [Am Heart J] 2015 Aug; Vol. 170 (2), pp. 223-30. Date of Electronic Publication: 2015 May 22. - Publication Year :
- 2015
-
Abstract
- Hypertrophic cardiomyopathy (HCM) is the most common monogenic heart disease with a frequency as high as 1 in 200. In many cases, HCM is caused by mutations in genes encoding the different components of the sarcomere apparatus. Hypertrophic cardiomyopathy is characterized by unexplained left ventricular hypertrophy, myofibrillar disarray, and myocardial fibrosis. The phenotypic expression is quite variable. Although most patients with HCM are asymptomatic, serious consequences are experienced in a subset of affected individuals who present initially with sudden cardiac death or progress to refractory heart failure. The Hypertrophic Cardiomyopathy Registry study is a National Heart, Lung, and Blood Institute-sponsored 2,750-patient, 44-site, international registry and natural history study designed to address limitations in extant evidence to improve prognostication in HCM (NCT01915615). In addition to the collection of standard demographic, clinical, and echocardiographic variables, patients will undergo state-of-the-art cardiac magnetic resonance for assessment of left ventricular mass and volumes as well as replacement scarring and interstitial fibrosis. In addition, genetic and biomarker analyses will be performed. The Hypertrophic Cardiomyopathy Registry has the potential to change the paradigm of risk stratification in HCM, using novel markers to identify those at higher risk.<br /> (Copyright © 2015 Elsevier Inc. All rights reserved.)
- Subjects :
- Adolescent
Adult
Aged
Biomarkers blood
Cardiomyopathy, Hypertrophic epidemiology
Cardiomyopathy, Hypertrophic physiopathology
Female
Follow-Up Studies
Global Health
Heart Ventricles diagnostic imaging
Heart Ventricles pathology
Humans
Male
Middle Aged
Morbidity trends
Prospective Studies
Severity of Illness Index
Stroke Volume
Time Factors
Young Adult
Cardiomyopathy, Hypertrophic diagnosis
Echocardiography, Doppler methods
Genetic Testing methods
Heart Ventricles physiopathology
Magnetic Resonance Imaging, Cine methods
Registries
Subjects
Details
- Language :
- English
- ISSN :
- 1097-6744
- Volume :
- 170
- Issue :
- 2
- Database :
- MEDLINE
- Journal :
- American heart journal
- Publication Type :
- Academic Journal
- Accession number :
- 26299218
- Full Text :
- https://doi.org/10.1016/j.ahj.2015.05.013