Core Health Outcomes in Childhood Epilepsy
King’s College London, UK.
About the study
We are a group of researchers based at King’s College London, dedicated to researching childhood epilepsy.
We are in the process of developing a set of outcomes for research into childhood epilepsy. An ‘outcome’ is some aspect of a person’s health that is measured, to compare treatments for specific health conditions.
Most research in epilepsy focuses on measuring the effect of epilepsy medicines on seizures as an outcome. However, we think it is important to include other outcomes that might be affected by seizures or epilepsy medicines. These include a child’s learning, sleep, mental health, school life and social life.
To help us, we are inviting the following people from the UK, to take part in an online survey:
- Children with rolandic epilepsy (age 8-16)
- Parents/carers of children with rolandic epilepsy
- Professionals who work with children with rolandic epilepsy (such as paediatricians, epilepsy nurses, teachers, psychologists)
Rolandic epilepsy is the most common type of childhood epilepsy (also known as benign childhood epilepsy with centro-temporal spikes/BECTS).
The survey will ask you to rate how important you think different outcomes/aspects of health are to measure in research on childhood epilepsy. There are 3 rounds of the survey.
When will this study be recruiting?
Now, until the end of March 2018.
What will participants be asked to do?
We would like you to take part in an online Delphi survey. The online survey allows you to rate which outcomes/aspects are important to you. It takes place in 2-3 rounds, and all responses are anonymous.
The main aim of a Delphi survey is to reach agreement between different groups of people. If any outcomes do not reach agreement, we will hold a voluntary face-to-face meeting for people who wish to attend.
Who can take part?
You can take part if you live in the UK and are a:
- Child with rolandic epilepsy (age 8-16)
- Parent/carer of children with rolandic epilepsy
- Professional who works with children with rolandic epilepsy (such as a paediatrician, epilepsy nurse, teacher, psychologist)
Who is conducting the research?
This project is part of CASTLE (Changing Agendas on Sleep Treatment and Learning in Childhood Epilepsy). This research is funded by the National Institute for Health Research because it is important for the NHS. It’s based at King’s College London, UK.
Who has reviewed this study?
This study has ethical approval and Health Research Authority (HRA) approval. It is funded by the National Institute for Health Research, because it is important for the NHS.
Please visit our website to register for the study and for more information: www.castlestudy.org.uk/choice
Or you can email email@example.com
A researcher will be happy to respond to you, and give you any more information.