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The Swiss Hemophilia Registry will collect data on the prophylactic and therapeutic use of factor concentrates in patients with hemophilia and other severe bleeding disorders in Switzerland.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Registry | Other |
| Measure | Description | Time Frame |
|---|---|---|
| Number of incidence of disease and inhibitor development | Demographics, Comorbidties, factor consumption for prophylaxis, bleeding and surgery, inhibito develeopment | 1 year |
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Inclusion Criteria:
Diagnosis of hemophilia or other severe bleeding disorders. Signed inform consent
Exclusion Criteria:
None
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Patients with hemophilia and other severe bleeding disorders
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Manuela Albisetti, MD | Contact | +41 44 266 71 38 | manuela.albisetti@kispi.uzh.ch |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Kantonsspital Aarau Zentrum für Onkologie/Hämatologie und Transfusionsmedizin | Recruiting | Aarau | 5001 | Switzerland |
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| Kinderklinik | Recruiting | Aarau | 5001 | Switzerland |
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| Universitätsspital Basel Diagnostische Hämatologie | Recruiting | Basel | 4031 | Switzerland |
|
| Universitätskinderspital beider Basel (UKBB) Abteilung Onkologie/Hämatologie | Recruiting | Basel | 4056 | Switzerland |
|
| Ospedale San Giovanni | Recruiting | Bellinzona | 6500 | Switzerland |
|
| Servizio di Ematologia Ospedale Regionale di Bellinzona e Valli | Recruiting | Bellinzona | 6500 | Switzerland |
|
| Inselspital, Universitätsspital Bern Poliklinik für Hämatologie | Recruiting | Bern | 3010 | Switzerland |
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| Kantonspital Graubünden | Recruiting | Chur | 7000 | Switzerland |
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| Unité d'Hémostase HUG | Recruiting | Geneva | 1211 | Switzerland |
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| Unité d'Oncologie-Hématologie pédiatrique, Hôpital des Enfants HUG | Recruiting | Geneva | 1211 | Switzerland |
|
| Centre Hospitalier Universitaire Vaudois Service d'Hématologie | Recruiting | Lausanne | 1011 | Switzerland |
|
| Policlinique d'onco-hématologie péd., CHUV | Recruiting | Lausanne | 1011 | Switzerland |
|
| Kantonsspital Luzern Abteilung Hämatologie | Recruiting | Lucerne | 6000 | Switzerland |
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| Kinderspital Luzern | Recruiting | Lucerne | 6000 | Switzerland |
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| Ostschweizer Kinderspital St. Gallen | Recruiting | Sankt Gallen | 9006 | Switzerland |
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| Kantonspital St. Gallen | Recruiting | Sankt Gallen | 9007 | Switzerland |
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| Kinder und Erwachsenenzentrum Sion Service Régional Valaisan de Transfusion Sanguine CRS | Not yet recruiting | Sion | 1950 | Switzerland |
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| University Children's Hospital | Recruiting | Zurich | 8032 | Switzerland |
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| University Hospital Zürich | Recruiting | Zurich | 8090 | Switzerland |
|
| ID | Term |
|---|---|
| D006467 | Hemophilia A |
| ID | Term |
|---|---|
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D020147 | Coagulation Protein Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
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| ID | Term |
|---|---|
| D012042 | Registries |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D011996 | Records |
| D009934 | Organization and Administration |
| D006298 | Health Services Administration |
| D017531 | Health Care Evaluation Mechanisms |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |
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