Hemophilia is a rare heredity bleeding disorder that requires treatment for life. While few therapeutic options were available in the past, multiple recent breakthroughs have fundamentally altered and diversified hemophilia therapy, with even more new therapeutic options forthcoming. These changes are mirrored by significant regulatory and legal changes, which have redefined the role of hemophilia registries in the European Union (EU). This dual paradigm shift poses new regulatory, scientific but also structural requirements for hemophilia registries. The aim of this manuscript is to enumerate these significant challenges and to demonstrate their incorporation into the redesign of the German Hemophilia Registry (Deutsches Hämophilieregister...
Haemophilia is a congenital disorder with bleeding episodes as its primary symptom. These episodes c...
There is a broad range of factor products approved in Germany for haemophilia A treatment. Since the...
Introduction: Looking into the future is difficult and sometimes hazardous. A reliable look into hae...
The Swiss Haemophilia Registry of the Medical Committee of the Swiss Haemophilia Society started in ...
Money gets still lost in the German health service by oversupply, undersupply and false care. The so...
Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and ...
Introduction: National Hemophilia registries were found to be powerful instruments to support health...
This report contains the updated consensus recommendations for optimal hemophilia care produced in 2...
National haemophilia registries are powerful instruments to support health care and research. A nati...
The Commitee of Haemophilia of the GTH has established a central registry for all German centers tre...
Introduction: The international certification of haemophilia centres in Europe is run by the Europea...
Hemophilia A (HA) and B (HB) are X-linked bleeding disorders caused by mutations in the F8 or F9 gen...
This report contains the updated consensus recommendations for optimal haemophilia care produced in ...
Comprehensive, integrated care provided by a multi-disciplinary team of experts improves outcomes an...
Gene therapy has recently become a realistic treatment perspective for patients with haemophilia. Re...
Haemophilia is a congenital disorder with bleeding episodes as its primary symptom. These episodes c...
There is a broad range of factor products approved in Germany for haemophilia A treatment. Since the...
Introduction: Looking into the future is difficult and sometimes hazardous. A reliable look into hae...
The Swiss Haemophilia Registry of the Medical Committee of the Swiss Haemophilia Society started in ...
Money gets still lost in the German health service by oversupply, undersupply and false care. The so...
Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and ...
Introduction: National Hemophilia registries were found to be powerful instruments to support health...
This report contains the updated consensus recommendations for optimal hemophilia care produced in 2...
National haemophilia registries are powerful instruments to support health care and research. A nati...
The Commitee of Haemophilia of the GTH has established a central registry for all German centers tre...
Introduction: The international certification of haemophilia centres in Europe is run by the Europea...
Hemophilia A (HA) and B (HB) are X-linked bleeding disorders caused by mutations in the F8 or F9 gen...
This report contains the updated consensus recommendations for optimal haemophilia care produced in ...
Comprehensive, integrated care provided by a multi-disciplinary team of experts improves outcomes an...
Gene therapy has recently become a realistic treatment perspective for patients with haemophilia. Re...
Haemophilia is a congenital disorder with bleeding episodes as its primary symptom. These episodes c...
There is a broad range of factor products approved in Germany for haemophilia A treatment. Since the...
Introduction: Looking into the future is difficult and sometimes hazardous. A reliable look into hae...