Candura Fabio, Menichini Ivana, Calizzani Gabriele, Giangrande Paul, Mannucci Pier Mannuccio, Makris Michael
European Haemophilia Consortium, Brussels, Belgium National Blood Centre, National Institute of Health, Rome, Italy.
European Haemophilia Consortium, Brussels, Belgium Necstep Studio Associato, Modena, Italy.
Blood Transfus. 2014 Apr;12 Suppl 3(Suppl 3):s519-24. doi: 10.2450/2014.0046-14s.
Work Package 4 Development of the standardisation criteria of the European Haemophilia Network project has the main objective of implementing a common and shared European strategy for a certification system for two levels of Haemophilia Centres: European Haemophilia Treatment Centres and European Haemophilia Comprehensive Care Centres in the Member States of the European Union.
An inclusive and participatory process for developing shared standards and criteria for the management of patients with inherited bleeding disorders has been carried out. The process has been implemented through four different consultation events involving the entire European community of stakeholders that significantly contributed in the drafting of the European Guidelines for the certification of Haemophilia Centres.
The Guidelines set the standards for the designation of centres that provide specialised and multidisciplinary care (Haemophilia Comprehensive Care Centres) as well as local routine care (Haemophilia Treatment Centres). Standards cover several issues such as: general requirements; patient care; advisory services; laboratory; networking of clinical and specialised services.
The drafting of the European Guidelines for the certification of Haemophilia Centres was performed adopting a rigorous methodological approach. In order to build the widest possible consensus to the quality standards, the main institutional and scientific stakeholders have been involved. The resulting document will significantly contribute in promoting standardisation in the quality of diagnosis and treatment in European Haemophilia Centres.
欧洲血友病网络项目标准化标准制定工作包的主要目标是,为欧盟成员国的两级血友病中心(欧洲血友病治疗中心和欧洲血友病综合关怀中心)实施一套通用且共享的欧洲认证体系战略。
已开展一个包容性和参与性的过程,用于制定遗传性出血性疾病患者管理的共享标准和准则。该过程通过四次不同的咨询活动得以实施,这些活动涉及整个欧洲利益相关者群体,他们为血友病中心认证欧洲指南的起草做出了重大贡献。
该指南为提供专科和多学科护理的中心(血友病综合关怀中心)以及当地常规护理中心(血友病治疗中心)的指定设定了标准。标准涵盖多个问题,如:一般要求;患者护理;咨询服务;实验室;临床和专科服务网络。
血友病中心认证欧洲指南的起草采用了严谨的方法。为了就质量标准达成尽可能广泛的共识,主要的机构和科学利益相关者都参与其中。最终形成的文件将极大地推动欧洲血友病中心诊断和治疗质量的标准化。