Luisetti M, Miravitlles M, Stockley R A
Dept of Respiratory Diseases, IRCCS San Matteo, Pavia, Italy.
Eur Respir J. 2002 Oct;20(4):1050-6. doi: 10.1183/09031936.02.00302502.
The Alpha One International Registry is a scientific foundation established to comply with a World Health Organization recommendation to develop a multinational registry of alpha1-antitrypsin deficiency, with the aim of creating a common database of subjects recognised in a standardised way. A commitment of the Alpha One International Registry members, belonging to 15 national registries, is to meet every 2 yrs in an open scientific conference to provide a scientific and clinical update on the deficiency. The second Alpha One International Registry meeting was held in Rapallo (Genoa, Italy) on September 27th-28th, 2001, and 26 speakers provided an exhaustive overview of all aspects of alpha1-antitrypsin deficiency, including epidemiology, genetics, biochemistry, associated conditions, established and novel therapeutic options, and markers of efficacy. In the framework of a rare and often under-recognised condition, this meeting is likely to be central to improving understanding and increasing awareness of alpha1-antitrypsin deficiency.
α1国际注册机构是一个科学基金会，其设立是为了遵循世界卫生组织的一项建议，即建立一个α1抗胰蛋白酶缺乏症的跨国注册机构，目的是创建一个以标准化方式识别的受试者通用数据库。α1国际注册机构的成员来自15个国家注册机构，他们承诺每两年参加一次公开科学会议，以提供有关该缺乏症的科学和临床最新情况。第二届α1国际注册机构会议于2001年9月27日至28日在拉帕洛（意大利热那亚）举行，26位发言人对α1抗胰蛋白酶缺乏症的各个方面进行了详尽概述，包括流行病学、遗传学、生物化学、相关病症、既定和新型治疗选择以及疗效标志物。在一种罕见且常常未得到充分认识的病症背景下，本次会议对于增进对α1抗胰蛋白酶缺乏症的理解和提高认识可能至关重要。
