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.
摘要：
注册管理机构是解决随机临床试验中通常未评估的问题的绝佳数据来源，包括自然史,疾病患病率，治疗方法和不良事件，和护理模式。全球和区域登记册可以提供数据，以确定各国在结果和血友病护理方面的差异，经济环境，和地区，同时促进研究和数据共享。在这份手稿中,我们重点介绍了五个出血性疾病登记处：来自澳大利亚和中国的国家登记处，儿科血友病管理网络（PedNet）数据的儿童谁已经接受了emicizumab，来自欧洲血友病安全监测（EUHASS）系统的数据，以及世界血友病联合会（WFH）登记册中有关血友病妇女和女孩的数据。来自这些和其他出血性疾病登记处的数据已经并将继续用于推进患者护理，了解治疗模式和不良反应，并确定需要增加和关注的领域。
