The first report from the valproate registry has been published, giving a better understanding of the care of women prescribed sodium valproate and providing a further basis to continue improving patient care.

The registry has been developed by NHS Digital and the Medicines and Healthcare products Regulatory Agency (MHRA) to further our understanding of the use, benefits, and risks of sodium valproate when taken during pregnancy. This report is the first step towards building a more complete antiepileptic registry, as recommended in last year’s ‘Cumberlege Review’.

The antiepileptic registry will oversee the implementation of the Pregnancy Prevention Programme (PPP) and its impact on the healthcare of women and their children. It will also support further research into the effects of antiepileptic drugs used in pregnancy. Future plans for the registry include an annual risk acknowledgement form and enabling women to add data to the registry themselves to inform its findings.

You can read the full report from the valproate registry here.

The importance of research in understanding the risks of valproate

Sodium valproate is an effective antiepileptic drug (AED) which can also be prescribed for bipolar disorder and migraines. The drug is no longer recommended for women of childbearing age unless they are on a PPP, due to new guidelines by the European Medicines Agency. Evidence from research funded by Epilepsy Research UK over the last decade was central to these guidelines. This research was one of several important initial studies that led to the understanding that using sodium valproate during pregnancy carries a 4 in 10 risk of developmental disorders and roughly a 1 in 10 risk of birth defects.

To drive more investment in this vital area of research, we need people with epilepsy who have been pregnant or are considering pregnancy, to share their views by joining our SHAPE NETWORK. People joining the network will also have the opportunity to influence and shape the future of research into epilepsy – start today by answering these questions.

Read more about the release of the Cumberlege (First Do No Harm) Review here.

Find out more about Epilepsy Research UK’s funded research in reducing risk in pregnancy here.