ORIGINAL ARTICLE

Evaluation of the National Congenital Anomaly System in England and Wales

T Misra¹, N Dattani², A Majeed¹

¹ Department of Primary Care and Social Medicine, Imperial College, London W6 8RP, UK
² Office for National Statistics, 1 Drummond Gate, London SW1V 2QQ, UK

Correspondence to:
Correspondence to:
Dr Misra
Department of Primary Care and Social Medicine, 3rd Floor, Reynolds Building, Imperial College-Charing Cross Campus, London W6 8RP, UK; taniamisra{at}hotmail.com

Objective: To evaluate the National Congenital Anomaly System (NCAS).

Methods: The NCAS in England and Wales based at the Office for National Statistics and the various regional registers that exchange data with it were examined, based on guidelines for evaluating public health surveillance systems, published by the Centres for Disease Control (CDC). Data relating to congenital anomaly notifications received from 1991 to 2002 were analysed.

Main outcome measures: The main outcome measures were based on CDC standards and included the level of usefulness of the system, simplicity, flexibility, data quality, acceptability, sensitivity, representativeness, timeliness, and stability of the system.

Results: The NCAS has two main tiers: the "passive" system of voluntary notifications and the anomaly registers, but many reporting sources within these. It receives about 7000 notifications a year. It is inflexible and has variable data quality. The voluntary nature of reporting affects the system’s acceptability. The sensitivity as compared with two regional registers (Trent and Wales) is about 33%. The congenital anomaly registers reporting to the NCAS achieve high levels of coverage and completeness. From 2003, they cover 42% of all births and account for the major proportion of the notifications.

Conclusions: The NCAS serves the important function of monitoring birth defects in England and Wales, but is not currently operating in a timely or effective way. It should be adapted to meet its main objectives more effectively. More regional anomaly registers should be instituted and existing registers supported through central funds.

Abbreviations: CDC, Centres for Disease Control; CUSUM, cumulative sum technique; NCAS, National Congenital Anomaly System; ONS, Office for National Statistics; PCT, Primary Care Trust; TOPs, terminations of pregnancy

Keywords: birth defects; congenital anomalies; surveillance; National Congenital Anomaly System

CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?

This article has been cited by other articles:

• Draper, E. S, Judith Rankin, Ann Tonks, Patricia Boyd, Diana Wel, (2009). Data needed to establish causes. BMJ 339: b3428-b3428 [Full Text]  
• Liu, X, Li, L, Cui, H, Liu, X, Jackson, V W (2009). Evaluation of an emergency department-based injury surveillance project in China using WHO guidelines. Inj. Prev. 15: 105-110 [Abstract] [Full Text]  
• Savva, G M, Morris, J K (2009). Ascertainment and accuracy of Down syndrome cases reported in congenital anomaly registers in England and Wales. Arch. Dis. Child. Fetal Neonatal Ed. 94: F23-F27 [Abstract] [Full Text]  
• Misra, T, Dattani, N, Majeed, A (2006). Evaluation of the National Congenital Anomaly System in England and Wales. J. Epidemiol. Community Health 60: 12-12 [Full Text]