比利时α-1抗胰蛋白酶缺乏症登记处的活动。

Activity of the alpha-1 antitrypsin deficiency registry in Belgium.

作者信息

Hutsebaut Jacques, Janssens Wim, Louis Renaud, Willersinn Frank, Stephenne Xavier, Sokal Etienne, Derom Eric

机构信息

Hôpitaux Iris Sud, Département de Médecine Interne, Service de Pneumologie , Brussels , Belgium.

出版信息

COPD. 2015 May;12 Suppl 1:10-4. doi: 10.3109/15412555.2015.1021916.

DOI:10.3109/15412555.2015.1021916

PMID:25938285

Abstract

A Belgian alpha-1-antitrypsin (AAT) deficiency registry has been established in 2003. Currently 55 patients are included. At the same time, a working group has been set up for publishing national guidelines. In 2014, several Belgian patients founded Alpha-1 Global. We hope that the integrated activities of all the stakeholders involved in AAT deficiency will permit a high quality care for all patients suffering from this disabling disease.

摘要

比利时于2003年建立了α-1抗胰蛋白酶（AAT）缺乏症登记处。目前已纳入55名患者。与此同时，还成立了一个工作组来发布国家指南。2014年，几名比利时患者创立了“α-1全球”组织。我们希望，参与AAT缺乏症防治工作的所有利益相关者的综合行动，将为所有患有这种致残性疾病的患者提供高质量的护理。