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The purpose of this study is to proof increasing patient satisfaction and preservation of quality of life in patients with Morbus Fabry disease receiving their Enzyme Replacement Therapy with Replagal (Agalsidase alfa) at home compared to receiving the infusions at the clinic or at doctor's practice.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Fabry's Disease under Replagal |
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| Measure | Description | Time Frame |
|---|---|---|
| Patient satisfaction estimated on a 10-ary Likert scale | comparison of baseline to 12 months value |
| Measure | Description | Time Frame |
|---|---|---|
| Number (per infusion) and severity of infusion-related side effects | baseline compared to 12 months |
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INCLUSION CRITERIA:
Exclusion Criteria:
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Patients with proven Fabry's Disease foreseen for home treatment with Agalsidase alfa at German Fabry centers
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| Name | Affiliation | Role |
|---|---|---|
| Study Director | Takeda | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Landeskrankenhaus Bregenz | Bregenz | A-6900 | Austria | |||
| LKH-Universitätsklinikum Graz |
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| Label | URL |
|---|---|
| To obtain more information on the study, click here/on this link. | View source |
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| ID | Term |
|---|---|
| D000795 | Fabry Disease |
| ID | Term |
|---|---|
| D013106 | Sphingolipidoses |
| D020140 | Lysosomal Storage Diseases, Nervous System |
| D020739 | Brain Diseases, Metabolic, Inborn |
| D001928 | Brain Diseases, Metabolic |
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| Graz |
| A-8036 |
| Austria |
| Paracelsus Medizinische Privatuniversität Salzburg | Salzburg | A-5020 | Austria |
| Universitätsklinik für Innere Medizin III | Vienna | A-1090 | Austria |
| Universitätsklinik für Kinder- und Jugendheilkunde | Vienna | A-1090 | Austria |
| Charité - Universitätsmedizin Berlin | Berlin | D-10117 | Germany |
| Klinik II für Innere Medizin | Cologne | 50937 | Germany |
| Med. Versorgungszentrum Dialyse-Centrum Cuxhaven | Cuxhaven | D-27476 | Germany |
| Alfried-Krupp-Krankenhaus Rüttenscheid | Essen | D-45131 | Germany |
| MVZ Immunologie am Krankenhaus Sachsenhausen | Frankfurt | 60594 | Germany |
| Zentrum für Kinder und Jugendmedizin | Freiburg im Breisgau | 79106 | Germany |
| Universitätsklinikum Gießen und Marburg | Giessen | 35392 | Germany |
| Facharzt für Allgemeinmedizin | Hagen | D-58089 | Germany |
| Facharzt für Innere Medizin/Kardiologie | Höxter | 37671 | Germany |
| Hans-Berger-Klinik für Neurologie | Jena | 07747 | Germany |
| Universitätsklinikum Mainz, Zentrum für Kinder- und Jugendmedizin | Mainz | 55131 | Germany |
| Private Practice, Dr. Glenn Sommer | Marienberg | D-09496 | Germany |
| KfH Kuratorium für Dialyse und Nierentransplantation e.V. | München | 80804 | Germany |
| Klinikum rechts der Isar | München | D-81675 | Germany |
| Landesklinikum St. Pölten, Neurologie | Pölten | A-3100 | Germany |
| Nephrologisches Zentrum Rendsburg | Rendsburg | 24768 | Germany |
| Universitätsklinikum Ulm | Ulm | D-89081 | Germany |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D059345 | Cerebral Small Vessel Diseases |
| D002561 | Cerebrovascular Disorders |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D040181 | Genetic Diseases, X-Linked |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D008661 | Metabolism, Inborn Errors |
| D008064 | Lipidoses |
| D008052 | Lipid Metabolism, Inborn Errors |
| D016464 | Lysosomal Storage Diseases |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D052439 | Lipid Metabolism Disorders |