Epilepsy Society welcomes new registry but calls for expansion

The Epilepsy Society has welcomed the publication of data from a new valproate registry but called for it to be expanded to include all anti-epilepsy drugs.

Last week the first in what has been promised to be a series of reports was released examining valproate use among women between the ages of 0 and 54. 

The report includes key data taken from the Medicines in Pregnancy Valproate Registry and provides information on the number of women prescribed valproate from April 2018 to September 2020. 

The report provides data for all women taking valpraote, regardless of their specific medical condition. 

Data shows that 47,532 women were prescribed valproate during the period of study. Of these, 180 were prescribed valproate while pregnant, including 16 women who were prescribed the drug for the first time. A further 238 women stopped taking valproate prior to becoming pregnant.

The Epilepsy Society has welcomed the registry, which is maintained by the Medicines and Healthcare products Regulatory Agency (MHRA) and NHS Digital, but believes it does not go far enough. 

On Tuesday, the Epilepsy Society launched our Safe Mum, Safe Baby campaign which seeks to ensure safer medication for pregnant women with epilepsy. As part of this campaign, we are calling for an immediate expansion of the Medicines in Pregnancy Valproate Registry to include all epilepsy drugs. 

A recent report from the Commission on Human Medicines highlighted growing evidence that many epilepsy drugs, not just valproate, can cause physical and neurodevelopmental harm to a baby when taken by pregnant women with epilepsy. Although the risk of such harm is not as high as for valproate, it is nevertheless significant. Drugs highlighted in this report include carbamazepine, topiramate, phenytoin and phenobarbital. 

Commenting, Nicola Swanborough, Head of External Affairs for the Epilepsy Society said:

“A registry that captures real-life experiences at grass root level is imperative if we are to understand the potential risks posed by epilepsy medications during pregnancy.

“We very much welcome the development of a valproate registry which is a testament to the families who have fought relentlessly to see this introduced.

“Now we must learn from their experience and ensure that the registry is expanded to include all epilepsy medications. That has to be a critical first step towards the development of safer epilepsy medications that won’t force women to choose between their own safety and that of their babies.”

It is clear that more needs to be done to collect and disseminate accurate data on the use of all anti-epileptic drugs in pregnancy.

While the MHRA have promised that they "plan over time" to include all epilepsy medications in the registry there is currently no clear timeframe for this. 

The Epilepsy Society is calling for the registry to be expanded as a matter of urgency to include individual data relating to all anti-epileptic drugs, so that scientists and researchers can identify specific risk factors and develop safer treatment options. 

At the Epilepsy Society we work closely with pregnant and postnatal women with epilepsy to ensure they have the best possible access to health guidance. A lack of data about commonly prescribed epilepsy drugs can therefore have serious consequences.

We believe that women need better, safer choices of medication. Through our Safe Mum, Safe Baby campaign we intend to make this a reality.