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

South Eastern Health Board Population 423,540 (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%: 1996-2001) Congenital Anomalies Register:Data From 1997

Map of South Eastern Health Board

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

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.

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.

Data

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

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 0.8/1,000 61% had spina bifida Dublin EUROCAT Register 1.42/1,000 births

Results Downs Syndrome Congenital Heart Defects Prevalence - 21.0/10,000 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)

Value - Prevention SEHB: 1997-1998 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)

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

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

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.

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.