ECLAMC: The Latin-American Collaborative Study of Congenital Malformations
ECLAMC: The Latin-American Collaborative Study of Congenital Malformations
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DOI：
10.1159/000080776
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发表时间：
2004-01-01
期刊：
影响因子：
--
通讯作者：
Orioli, IM
中科院分区：
文献类型：
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作者：
Castilla, EE;Orioli, IM
定义：ECLAMC(‘EStudio Colborativo拉丁裔americano de Malformacones Congenitas’)是一个使用病例对照方法对拉丁美洲医院先天性畸形病因中的风险因素进行临床和流行病学调查的项目。这是缺乏机构基础和指定预算的专业人士之间的自愿协议。ECLAMC的资金通常来自研究资助机构，而不是公共卫生部。阿根廷和巴西的国家研究理事会在其存在的36年中一直是主要的支助来源。由于生命和健康统计在南美洲是不可靠的，ECLAMC收集了以医院为基础的出生样本中分母所需的所有信息。ECLAMC可以被定义为对研究和预防出生缺陷感兴趣的人的大陆网络。历史和演变：从机构的角度来看，ECLAMC的总部设在阿根廷和巴西的不同中心，但始终作为一个独立的研究项目，没有明确的行政联系。ECLAMC于1967年开始运作，作为一项仅限于阿根廷布宜诺斯艾利斯市的调查，它逐渐扩大到覆盖南美洲所有10个国家以及哥斯达黎加和多米尼加共和国。尽管ECLAMC自1967年以来基本上保持了原来的实验设计，但由于该计划积累的数据、日益增长的经验以及科学的发展，发生了技术上的修改，包括一个DNA库和一个完全信息化的数据处理系统。自1974年以来，ECLAMC一直是国际出生缺陷监测系统信息中心的创始成员；自1994年以来一直是世卫组织预防先天性畸形合作中心的创始成员；自2000年以来一直是美国国立卫生研究院妇女和儿童健康研究全球网络的合作成员。方法论。ECLAMC的妇产医院网络每年检查大约20万名新生儿。所有出生时诊断出的体重在500克或以上的婴儿的所有大小异常都要根据程序手册进行登记。在同一医院出生的下一个相同性别的非畸形婴儿被选为每个病例的对照对象。因此，获得了性别、出生时间和地点匹配的一对一健康对照组。作为一种流行病监测系统，ECLAMC系统地观察不同畸形频率的波动，并在特定畸形可能流行的情况下，在给定时刻和给定区域采取行动，确定其原因。由于终止妊娠在南美洲有严格的法律限制，预防出生缺陷应集中在初级、产前和第三级措施上。第三级措施旨在从医学、心理和社会角度避免受影响患者的并发症。版权所有(C)2004年S.Karger AG，巴塞尔。
Definition: ECLAMC ('Estudio Colaborativo Latino Americano de Malformaciones Congenitas') is a program for the clinical and epidemiological investigation of risk factors in the etiology of congenital anomalies in Latin-American hospitals, using a case-control methodological approach. It is a voluntary agreement among professionals lacking institutional base as well as designated budgets. ECLAMC has been usually funded by research-funding agencies rather than public health ministries. The National Research Councils of Argentina and Brazil have been the main sources of support during its 36 years of existence. Since vital and health statistics are unreliable in South America, ECLAMC collects all the information required for the denominators in a hospital-based sample of births. ECLAMC can be defined as a continental network of persons interested in research and prevention of birth defects. History and Evolution: From the institutional point of view, ECLAMC has had headquarters in diverse centers of Argentina and Brazil, but always as an independent research project, without a defined administrative link. ECLAMC began operating in 1967, as an investigation limited to the city of Buenos Aires, Argentina, and it gradually expanded until covering all the 10 countries of South America as well as Costa Rica and the Dominican Republic. Even though ECLAMC has maintained essentially the same original experimental design since 1967, due to the data accumulated by the program, the increasing experience as well as the development in science, technical modifications occurred including a DNA bank and a fully informatized data handling system. Since 1974 ECLAMC has been a founder member of the International Clearinghouse for Birth Defects Monitoring Systems; since 1994 a WHO Collaborating Center for the Prevention of Congenital Malformations, and since 2000 a collaborating member of the NIH Global Netwok for Women's and Children's Health Research. Methodology. The maternity hospital network of ECLAMC examines around 200,000 births per year. All major and minor anomalies diagnosed at birth in infants weighing 500 g or more are registered according to a manual of procedures. The next non-malformed baby of the same sex born in the same hospital is selected as a control subject for each case. Thus, a one-to-one healthy control group matched by sex, time and place of birth is obtained. As a system of epidemic surveillance, ECLAMC systematically observes the fluctuations in the frequencies of different malformations and, in the case of an alarm for a probable epidemic of a given malformation, at a given moment, and given area, it acts to identify its cause. As termination of pregnancy has severe legal restrictions in South America, prevention of birth defects should concentrate on primary, preconceptional and tertiary measures. Tertiary measures aim to avoid complications of the affected patients from the medical, psychological, and social standpoints. Copyright (c) 2004 S. Karger AG, Basel.