Suresh Seshadri, Thangavel Gurusamy, Sujatha Jagadeesh, Indrani Suresh
Fetal Care Research Foundation, 203, Avvai Shanmugam Salai, Royapettah, Chennai 600014, Tamil Nadu.
Natl Med J India. 2005 Sep-Oct;18(5):259-62.
India is undergoing an epidemiological transition--communicable diseases are on the decline due to better living conditions and healthcare delivery. On the other hand, the relative increase in the prevalence of non-communicable, chronic and genetic diseases threatens to be a public health problem in India. One such group of disorders is congenital malformations. Though several studies have been done on congenital malformations in India since the early 1960s, coinciding with the thalidomide tragedy in the West, no uniform methods are available for the surveillance of birth defects. Each study has come out with varying results, not only because of the geographic variation in birth defects but also due to the varying standards adopted by each study in data collection, case definition and other methodological issues. Setting up a mechanism to understand the extent and nature of birth defects would involve the creation of a birth defects registry. The goals and objectives of such a registry should be formulated before it is set up. There are three types of registries-descriptive, analytical and preventive. These can also be classified as population- or hospital-based. Whether a registry is population- or hospital-based depends largely on the movement of mothers for delivery, registration of vital events in an area defined by the programme, as well as the resources available to the registry. Data can be collected in a passive or active manner, which also depends on the resources available to the registry. Every registry should have its own working definition of eligible cases to be reported, depending on the diagnostic services available in that area, and multiple sources of information should be used to improve the ascertainment rate. All the diagnostic terms should be coded and the information collected should be stored in a well-constructed database, preferably a relational type. Registries must evaluate their methods of data collection periodically to estimate the number of false-positive and false-negative reports. Ethical issues, cost and funding for the employment of various specialized professionals should be considered before setting up a registry.
印度正在经历流行病学转变——由于生活条件和医疗服务的改善，传染病发病率呈下降趋势。另一方面，非传染性、慢性和遗传性疾病患病率的相对上升有可能成为印度的一个公共卫生问题。先天性畸形就是这样一类疾病。自20世纪60年代初以来，印度已经针对先天性畸形开展了多项研究，这与西方的沙利度胺悲剧同时发生，但目前尚无统一的出生缺陷监测方法。每项研究得出的结果都不尽相同，这不仅是因为出生缺陷存在地理差异，还因为每项研究在数据收集、病例定义和其他方法学问题上采用的标准各不相同。建立一个了解出生缺陷程度和性质的机制需要创建一个出生缺陷登记处。在设立登记处之前，应明确其目标和宗旨。登记处有三种类型——描述性、分析性和预防性。这些也可分为基于人群或基于医院的登记处。一个登记处是基于人群还是基于医院，很大程度上取决于产妇分娩地点的变动情况、在该项目所定义区域内生命事件的登记情况，以及登记处可利用的资源。数据可以通过被动或主动方式收集，这也取决于登记处可利用的资源。每个登记处都应有自己关于应报告合格病例的工作定义，这取决于该地区可提供的诊断服务，并且应使用多种信息来源以提高确诊率。所有诊断术语都应进行编码，所收集的信息应存储在一个结构良好的数据库中，最好是关系型数据库。登记处必须定期评估其数据收集方法，以估计假阳性和假阴性报告的数量。在设立登记处之前，应考虑伦理问题、成本以及聘请各类专业人员所需的资金。
