Trial Summary and Frequently Asked Questions

What is the essential information I need to know about EcLiPSE?
Long lasting seizures are:
      a medical emergency and
      need to be treated as quickly as possible.

There are two possible medicines:

 Levetiracetam (Keppra) 

In order to know which medicine works best in an emergency (phenytoin or Keppra) we need to use them without delaying treatment.

If you (or your child) has a long lasting seizure we may treat you/your child with
one of these two medicines as part of the EcLiPSE study.  

Once the  medical emergency has passed and if you (or your child) have been included in the study, a member of the EcLiPSE team at your site will speak to you about EcLiPSE.

What do I need to know about phenytoin and levetiracetam?
Phenytoin is the medicine usually given. This medicine has been used to treat children and young people in this way for many years and your child may have received phenytoin as part of  their routine care.

Phenytoin will usually stop the seizure in just over half of the children and young people who receive it. This medicine has to be given slowly and carefully because it can cause serious side-effects that may affect the heart, blood pressure and skin.

       Levetiracetam (Keppra)
Keppra is another medicine that is commonly used to help prevent seizures in children and young people. It has been used occasionally in the emergency setting for children and young people with long lasting seizures.

Studies of Keppra in adult emergency situations suggest that it may be a useful alternative medicine to phenytoin. Keppra can be given more quickly than phenytoin.
No serious side effects have been reported with the use of Keppra, but it may cause mild sedation, agitation, or a skin reaction including swelling of the tongue and lips and/or a red itchy rash. 

How will it be decided what treatment is given? 
In this study children and young people have an equal chance of receiving either phenytoin or Keppra. The treatment order for the two medicines has already been decided by a computer programme.

What happens after treatment?
The doctors and nurses will continue to monitor you (or your child) closely and treat according to local practice. A member of the EcLiPSE will also come and speak to you about the study. You will be able to ask them questions you may have about the study. The team will then ask whether you would be happy for them to collect some information on you/your child. This information will then be used to help find out which treatment works best.

The results of this study could help to improve the way other children with long lasting seizures are treated in the future.

Do you (or your child) have to take part?
No, you do not have to take part. However, before you make your final decision we would suggest that you find out more about the study by speaking to one of your local EcLiPSE team or speak to your (or child’s) paediatrician or neurologist.  

Why are you not asked prior to treatment?
The first priority is to treat you (or your child). We would not want to delay treatment by asking you to take part first.

EcLiPSE and your information

All information collected about you or your child during this study is confidential.  The study has now closed to recruitment. This is to inform trial participants that there will be no further opportunity to withdraw data from the EcLiPSE Database after Thursday 24th May 2018. Please contact for further information.  We would like to thank all families involved for their participation.

How we use your information

Alder Hey Children’s NHS Foundation Trust and University of Liverpool take great care to abide by our legal and moral obligations when handling your personal and healthcare data. Due to changes introduced in the EU General Data Protection Regulation (GDPR), we would like to provide you with information on the lawful basis on which we are processing your data. The lawful basis for the processing of your personal data for the research study which you have participated in is a “task in the public interest”.

As an NHS organisation and a University, Alder Hey Children’s NHS Foundation Trust and University of Liverpool use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisations, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research.  This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Health and care research, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officers who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

The Data Protection Officers for Alder Hey Children’s NHS Foundation Trust and University of Liverpool are Joanne Fitzpatrick (Alder Hey) and Vicki Heath (University of Liverpool).
They may be contacted via email at the below addresses respectively:



I'm fine with this [X]

The site uses cookies, some may have been set already. Please refer to our privacy policy & cookie usage statement.
If you continue to use the site we'll assume you're happy to accept the cookies.