1. Pregnancy outcomes for neural tube defect (NTD) affected pregnancies in different ethnic groups in the UK Jordana Peake IfWH and ICH, UCL (j.peake@ucl.ac.uk)

2. Overview Background Study Aim Methods Results Conclusions Future work

3. Neural tube defects (NTDs) Severe congenital abnormalities caused by failed closure of the embryonic neural tube. Affect approximately 1 in 1,000 pregnancies worldwide. Complex aetiology. Folic acid recommended for prevention. Spina bifida Anencephaly Encephalocele

4. Pregnancy outcomes for NTDs

6. Study Aim To explore how maternal ethnicity influences the decision of whether to continue the pregnancy or not when it is discovered that a baby has an NTD.

7. Methods The association between ethnicity and whether the NTD affected pregnancy was terminated or not, was explored using a logistic regression model. The mitigating effect of whether the NTD was isolated or not; the type of NTD; deprivation; age of mother and age, in weeks, at which the NTD was discovered were also explored. Sample All NTD affected pregnancies with known maternal ethnicity in EMSYCAR and SWCAR for the years 2006 to 2011 inclusive

8. Results

10. Ethnicity and TOPFA/non-TOPFA model: Pakistani, Black African and Black Caribbean women are less likely to terminate their pregnancy. OR for Pakistani and Black African women moves slightly closer to 1; effect for Black Caribbean women no longer significant. No change for ethnicity but effect for deprivation (NTDs are discovered earlier in those less deprived) attenuated No effect on ethnicity and mild effect on deprivation No observed effect Slightly bigger effect observed for Pakistani mothers i.e. OR moves further from 1 and slight attenuation of effect for deprivation Deprivation Age of discovery Isolated or non- isolated NTD NTD type Age of mother

11. Results

12. Conclusions Pakistani, Black African and Black Caribbean women are less likely than white women to terminate their pregnancy when it is discovered that their baby has an isolated NTD. A larger sample size is required to elucidate whether the same effect is observed across different NTD types and within the non-isolated NTD group for mothers of Pakistani and Black African ethnic origin.

13. Future work Multiple imputation techniques will be used to “fill” missing ethnicity data from NorCAS, CAROBB and CARIS This larger dataset will be used to explore whether there is an ethnic difference for non-isolated cases and any discrepancies across different NTD types. Reasons why Pakistani women are less likely to terminate their pregnancy are being explored in a qualitative study.

14. Acknowledgements EMSYCAR, NorCAS, CAROBB, SWCAR and CARIS Anna Springett at BINOCAR Professor Andrew Copp, Dr Jill Shawe and Dr Rachel Knowles. George Kafatos UCL Grand Challenges