**BINOCAR PRESS STATEMENT 06/10/2004 - re BBC Wales Week in Week Out**

With respect to the “Week in Week Out” programme screened on BBC Wales (10.35pm Tuesday 5th October) that reported a possible increase in the number of births of babies with the rare birth defect “gastroschisis” in Wales.

The British Isles Network of Congenital Anomaly Registers (BINOCAR) reviewed data about gastroschisis from across the British Isles at their annual scientific meeting (4/5th Oct 2004). BINOCAR recommend that follow-up research should be carried out to clarify whether the increase is real or just a transient peak.

Gastroschisis is a rare anomaly that does vary over time and has shown a slow increasing trend, worldwide over the past twenty years. This particular condition is more common in young mothers.

Further research would help to establish:

a) Whether the current increase in Wales is real;
b) If this increase is isolated or occurring across the whole of the British Isles;
c) The possible causes of this condition.

We understand the concerns of families affected by this condition and of those worried that they may be at risk because of where they live. It is these concerns that drive us to support further research in this area.

BINOCAR registries are collaborating to monitor gastroschisis rates across the areas that they cover, and will continue this work for the foreseeable future.

Unfortunately, regional congenital anomaly registers cover only approximately half of the UK population. These registers collect information about birth / pregnancies affected by congenital anomalies in order to monitor trends and to identify possible clusters.

Until resources are made available to secure the work of existing regional registers and to establish new registers, coverage of the UK population with reliable data will remain incomplete. However, as part of their ongoing work AND to reassure parents, BINOCAR have set up a working group to closely monitor the situation and to investigate this issue further.