1. Congenital Anomalies Register -Of What Value?
South Eastern Health Board (R of I)
Dr Máire O’Connor
Ms Brenda Cooper

2. South Eastern Health Board
Population 423, (2002 Census)
Population Density = 45persons/km2
(ie predominantly rural)
Social Class: 65% class 1-4 (1996 Census)
Birth Rate (Crude) = 15.5/1000 population
(increase of 1.6%: )
Congenital Anomalies Register:Data From 1997

3. Map of South Eastern Health Board

4. Value Of Register Background: Health Impact of congenital anomalies:
8500 hospital discharge per year in Ireland due to congenital anomalies
41% of infant deaths are due to congenital anomalies
Surveillance data needed
Planning
Prevention
Emerging problems including identification of aetiological factors
Evaluate
Inform

5. Aim South East Congenital Anomalies Register
To establish Congenital Anomalies Register for the South Eastern Health Board which would be compatible with data collected from other Congenital Anomalies Registers both in Ireland and in Europe.

6. Objectives of Register
To provide epidemiological information on congenital anomalies
To detect & investigate trends in the frequency of congenital anomalies in order to assess the impact of known or suspected risk factors
To evaluate the effectiveness & efficiency of health services in terms of primary prevention, diagnosis and treatment.
To act as an information and & resource centre regarding clusters or exposures or risk factors of concern and to contribute to training of professionals
To provide a collaborative network & infrastructure for aetiological and clinical research related to the causes & prevention of congenital anomalies and the treatment and care of affected children.

7. Data

8. Cost Resources: ~50,000 Euro/Year 1/2 time nurse
Specialist in Public Health Medicine:Session
Travel
Computer & Soft Ware
Continual Professional Development

9. Results South Eastern Health Board Mean No of anomalies/child: 1.3
Congenital Anomalies 34.4/1000 births
includes pyloric stenosis
Mean No of anomalies/child: 1.3
(Dublin EUROCAT Register 1.5)
Neural Tube Defects
Prevalence 0.8/1, % had spina bifida
Dublin EUROCAT Register 1.42/1,000 births

10. Results Downs Syndrome Congenital Heart Defects
Prevalence /10,000 births
(19.6/10,000 Dublin EUROCAT Register)
Associated Cardiac anomalies: 40% of Downs Births
(45.8% Dublin EUROCAT Register)
Congenital Heart Defects
Prevalence 56.5/10,000 births
(Dublin EUROCAT Register 56.9/10,000)

11. Value - Prevention
SEHB: survey of maternity women post delivery re folic acid
high awareness of folic acid importance,
less aware of link with neural tube defects
50% advised to take folic acide prior to pregnancy
Planned Pregnancy - 50% - better folic acid knowledge & behaviour
Previous Pregnancies: not associated with taking folic acid
<1/3 took folic acid prior to conception or in initial stages of pregnancy
Folic acid should reduce prevalence by 75% (vs no folic)

12. Value - Planning Downs Congenital Heart Disease
Health & Other Services Planning:
80% of babies with Down’s survive to 10 yrs of age.
Survival influenced by associated cardiac anomalies
Congenital Heart Disease
Health Service Planning: Annual recurring need of tertiary paediatric cardiac service from outside region

13. Value -Emerging Problems, Evaluation
Environmental Queries: clusters/concerns
~3 queries Jan-June 2003: data available to answer initial questions vs need for special surveys (trichlorethylene, PCBs, uranium)
Evaluation
Prevalence of Neural Tube Defects in South East (0.7/1000 births) vs Dublin (1.42/1000 births): - ?changing problem - ?different risk factors

14. Value - Information Information leaflet on Register
Health Care Workers
Public
Parliamentary Questions etc - ready answers
Education/Feedback eg to Midwives/Obstetricians re no difference in use of folic between Primagravidas and Multigravida women.

15. Summary
Regional Surveillance of Congenital Anomalies is feasible at a relatively low cost
Regional Surveillance provides valuable information for
monitoring of congenital anomlies
health service planning
environmental health impact etc
As part of a larger network of similar registers - Dublin, British Isles, Europe - the value of the South East data is more robust.