The importance and evolution of bleeding disorder registries.
Haemophilia
; 30 Suppl 3: 21-28, 2024 Apr.
Article
en En
| MEDLINE
| ID: mdl-38571362
ABSTRACT
Registries are excellent sources of data to address questions that are typically not evaluated in randomized clinical trials, including natural history, disease prevalence, treatment approaches and adverse events, and models of care. Global and regional registries can provide data to identify differences in outcomes and in haemophilia care between countries, economic settings, and regions, while facilitating research and data sharing. In this manuscript, we highlight five bleeding disorder registries Country registries from Australia and China, Paediatric Network on Haemophilia Management (PedNet) data on children who have received emicizumab, data from the European Haemophilia Safety Surveillance (EUHASS) system, and data on women and girls with haemophilia from the World Federation of Haemophilia (WFH) registries. Data from these and other bleeding disorder registries have been and will continue to be used to advance patient care, understand treatment patterns and adverse reactions, and identify areas of increased need and focus.
Palabras clave
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Hemofilia A
Límite:
Child
/
Female
/
Humans
País/Región como asunto:
Asia
/
Oceania
Idioma:
En
Revista:
Haemophilia
Asunto de la revista:
HEMATOLOGIA
Año:
2024
Tipo del documento:
Article
País de afiliación:
Australia