Christensen K, Knudsen L B
Centre for Health and Social Policy, Odense University.
Dan Med Bull. 1998 Feb;45(1):91-4.
General registration of congenital malformations was established in Denmark in the early 1960s as a consequence of the thalidomide tragedy. The aims of the present paper are to describe the registration of congenital malformations in Denmark since the thalidomide tragedy, to discuss the limitations of these data and to point towards possibilities for improving the registration of congenital malformations in the future. Important components in a surveillance system are compulsory detailed reporting of malformations shortly after the diagnoses have been made and continuous expert evaluation of all reports. However, since 1995 the registration of congenital malformations in Denmark is based mainly on routine discharge diagnoses from hospitals. A high quality registration of congenital malformations in Denmark would be particularly valuable, because such a register together with existing health related registers and an ongoing large scale cohort study of pregnant women would provide a unique resource for etiological research in congenital malformations. Considering the consequences of congenital malformations for the affected children, their families and society, the establishment of a high quality registration of congenital malformations seems justifiable--and the Swedish experience shows that it is feasible.
20世纪60年代初,由于沙利度胺悲剧,丹麦建立了先天性畸形的总体登记制度。本文的目的是描述自沙利度胺悲剧以来丹麦先天性畸形的登记情况,讨论这些数据的局限性,并指出未来改善先天性畸形登记的可能性。监测系统的重要组成部分包括在做出诊断后不久强制详细报告畸形情况,以及对所有报告进行持续的专家评估。然而,自1995年以来,丹麦先天性畸形的登记主要基于医院的常规出院诊断。丹麦高质量的先天性畸形登记将特别有价值,因为这样一个登记册与现有的健康相关登记册以及正在进行的大规模孕妇队列研究相结合,将为先天性畸形的病因研究提供独特的资源。考虑到先天性畸形对受影响儿童、其家庭和社会的影响,建立高质量的先天性畸形登记似乎是合理的——瑞典的经验表明这是可行的。