Volume 193 - Issue 7
Congenital anomalies — why bother?
Author: R Brian Lowry
Med J Aust 2010; 193 (7): 428. || doi: 10.5694/j.1326-5377.2010.tb03982.x
Published online: 4 October 2010
Published online: 4 October 2010
To the Editor: In their recent editorial, Bower and colleagues effectively summarised the problem of apparent governmental indifference to congenital anomalies.1 This is not unique to Australia and probably exists worldwide.
National systems to collect congenital anomalies data were set up in many countries in the mid 1960s, including the National Congenital Anomaly System in the United Kingdom and the Canadian Congenital Anomalies Surveillance System. This followed the thalidomide tragedy and exemplified that it often takes an acute crisis to stimulate politicians into action. However, due to a lack of leadership, foresight and finances,2-4 these systems gradually declined to the extent that they became of very little value, lacking in accurate ascertainment and pregnancy termination data. As a result, regional registries were set up in England and Wales, and Canada was left with only two provinces (British Columbia and Alberta) collecting data.
Prevention is one of the new driving forces for collecting good data, and the advent of using folic acid to effectively reduce neural tube defects brought a new urgency to the need for comprehensive useable data. Accordingly, the Canadian government set up a task force and formed a new entity in 2002, the Canadian Congenital Anomalies Surveillance Network, with a mandate to provide logistical and financial help to all 10 provinces and three territories.
While progress has been slow, it has been very encouraging, with three additional provinces and one territory developing new surveillance systems this fiscal year (April 2010 – March 2011). The Network has set up guidelines and standards to enable all provinces and territories to collect data in a comparable format,5 which can then be forwarded to a central database in the national capital, Ottawa. The quality of the data should be improved because they are gathered at a local level.
This model could be adapted for use in Australia because, according to Bower et al,1 a nucleus of good data from at least three states already exists.
References
- Bower CI, Lester-Smith D, Elliott EJ. Congenital anomalies — why bother [editorial]? Med J Aust 2010; 192: 300-301. 0_CBBBBEIJ
- Misra T, Dattani N, Majeed A. Evaluation of the National Congenital Anomaly System in England and Wales. Arch Dis Child Fetal Neonatal Ed 2005; 90: F368-F373. 0_CBBFHIAB
- Boyd PA, Armstrong B, Dolk H, et al. Congenital anomaly surveillance in England — ascertainment deficiencies in the national system. BMJ 2005; 330: 27-31. 0_CBBGAGGD
- Lowry RB. Congenital anomalies surveillance in Canada. Can J Public Health 2008; 99: 483-485. 0_pgfId-2130148
- Public Health Agency of Canada. Canadian Congenital Anomalies Surveillance Network recommendations and guidelines. http://www.phac-aspc.gc.ca/ccasn-rcsac/rec-eng.php (accessed Aug 2010).