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The Austrian Hypertrophic Cardiomyopathy (HCM) Registry is a prospective, multicenter registry enrolling patients at multiple outpatient clinics across Austria including academic and non-academic centers. Patients will undergo a structured examination process including assessment for symptoms of HCM, past medical history, concomitant medication, family history and the presence of HCM-specific red flags. Furthermore, clinical data derived from electrocardiogram, echocardiography, laboratory analysis, and genetic testing will be collected focusing on a lean variable dictionary and, in addition, specific hypothesis-driven research parameters. All data are entered into an electronic case report form (eCRF) (Phoenix Clinical Trial Management System). In order to perform multicenter analyses, data can be extracted from the eCRF after approval by the steering committee.
The Austrian Hypertrophic Cardiomyopathy (HCM) Registry is a prospective, multicenter registry enrolling patients at multiple outpatient clinics across Austria including academic and non-academic centers. Patients will undergo a structured examination process including assessment for symptoms of HCM, past medical history, concomitant medication, family history and the presence of HCM-specific red flags. Furthermore, clinical data derived from electrocardiogram, echocardiography, laboratory analysis, and genetic testing will be collected focusing on a lean variable dictionary and, in addition, specific hypothesis-driven research parameters. All data are entered into an electronic case report form (eCRF) (Phoenix Clinical Trial Management System). Every site will nominate one representative for the steering committee which will serve as the regulatory authority with the compentence to approve research and funding proposals.
The Austrian multicenter HCM Registry aims to facilitate a wide range of innovative cross-sectional and longitudinal epidemiological analyses unravelling gaps in evidence in HCM. The standardized clinical assessment might harmonize standards of clinical care in HCM patients in Austria.
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| Measure | Description | Time Frame |
|---|---|---|
| All cause mortality | All cause mortality | Through study completion, on average 20 years |
| Cardiovascular events | Cardiovascular events | Through study completion, on average 20 years |
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Inclusion Criteria:
Exclusion criteria:
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The study population includes subjects who fulfill criteria of HCM and are treated in Austria.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Nicolas D Verheyen, MD | Contact | 004331638530173 | nicolas.verheyen@medunigraz.at | |
| Viktoria Santner, MD | Contact | 004331638531233 | viktoria.santner@medunigraz.at |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Kepler University Hospital Linz | Recruiting | Linz | Linz | 4021 | Austria |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 41984359 | Derived | Santner V, Granitz C, Grubler MR, Dalos D, Reiter C, Zaruba MM, Auer J, Moertl D, Rab A, Rainer PP, Waltl G, Ebner C, Weber T, Bonderman D, Dobner S, Tuppinger H, Holler V, Schwegel N, Ablasser K, Zirlik A, Graf A, Gharibeh S, Lanzerstorfer J, Worgotter K, Mann C, Masood S, Meledeth C, Steinwender C, Logtenberg A, Messner M, Primus C, Auersperg P, Mackova L, Baurecht C, Winkler S, Schneiderbauer-Porod S, Danninger K, Charwat-Resl S, Harbich P, Krenn R, Verheyen N. The prospective Austrian hypertrophic cardiomyopathy registry - design, methods and results of the run-in period. Heart Fail Rev. 2026 Apr 15;31(1):56. doi: 10.1007/s10741-026-10630-6. |
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| ID | Term |
|---|---|
| D002312 | Cardiomyopathy, Hypertrophic |
| D017379 | Hypertrophy, Left Ventricular |
| ID | Term |
|---|---|
| D009202 | Cardiomyopathies |
| D006331 | Heart Diseases |
| D002318 | Cardiovascular Diseases |
| D001020 | Aortic Stenosis, Subvalvular |
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Blood samples
| University Hospital St. Pölten | Recruiting | Sankt Pölten | Lower Austria | 3100 | Austria |
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| Hospital Landesklinikum Wiener Neustadt | Recruiting | Wiener Neustadt | Lower Austria | 2700 | Austria |
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| Paracelsus Medical University of Salzburg | Recruiting | Salzburg | State of Salzburg | 5020 | Austria |
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| Clinic Cardinal Schwarzenberg | Recruiting | Schwarzach im Pongau | State of Salzburg | 5620 | Austria |
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| Medical University of Vienna | Recruiting | Vienna | State of Vienna | 1090 | Austria |
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| Favoriten Clinic Vienna | Active, not recruiting | Vienna | State of Vienna | 1100 | Austria |
| Klinik Ottakring | Recruiting | Vienna | State of Vienna | Austria |
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| Hospital Graz 2 West | Recruiting | Graz | Styria | 8020 | Austria |
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| Medical University of Graz | Recruiting | Graz | Styria | 8036 | Austria |
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| Medical University of Innsbruck | Recruiting | Innsbruck | Tyrol | 6020 | Austria |
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| Hospital St. Josef Braunau | Recruiting | Braunau am Inn | Upper Austria | 5280 | Austria |
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| Ordensklinikum Linz | Recruiting | Linz | Upper Austria | 4020 | Austria |
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| General Hospital St. Johann in Tirol | Recruiting | Sankt Johann in Tirol | 6380 | Austria |
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| Clinic Wels-Grieskirchen | Recruiting | Wels-Grieskirchen | 4600 | Austria |
|
| D001024 |
| Aortic Valve Stenosis |
| D000082862 | Aortic Valve Disease |
| D006349 | Heart Valve Diseases |
| D006332 | Cardiomegaly |
| D006984 | Hypertrophy |
| D020763 | Pathological Conditions, Anatomical |
| D013568 | Pathological Conditions, Signs and Symptoms |