The Brain development in Early Epilepsy (BEE) study aims to track the development of babies with epilepsy. The study is funded by an Epilepsy Research UK and Autistica fellowship, and will be co-sponsored by King’s College London and Guy’s and St Thomas’ NHS Foundation Trust. UKIST members were involved in focus groups in the early stages of the study planning and regularly reach out to newly diagnosed families to help find participants.
Group member Laura has shared her experience of participating;
I heard about the BEE study shortly after Aidan was diagnosed with infantile spasms at the age of 6 months. The BEE study stands for Brain development in Early Epilepsy and aims to track development of babies with epilepsy, in order to understand features that might predict later outcomes, such as autism.
After enrolling on the study we completed a number of developmental questionnaires and play based tasks including recorded play sessions and activities generated by a purpose built app.
We recently completed the 10 month home based assessment. Two of the study’s researchers came out to see us in Essex and completed further assessments including an in-person developmental questionnaire and an EEG which tracked Aidan’s brain activity while watched a series of videos. Despite all the wires and the dreaded EEG which we are all too familiar with he really enjoyed the activity and had a long nap after to recoup for the second half of the session. We’re looking forward to receiving the assessment report in a few weeks and the process will be repeated again at 14 months and 24 months.
Is it a big commitment to take part? In a way yes – the home based assessment took about 3 hours and I was able to facilitate this because I’m still on maternity leave and our toddler was in nursery. That said, the researchers were incredibly friendly, professional and knowledgeable and ultimately I believe that we wouldn’t be where we are today without the dedicated work of researchers to develop our understanding of conditions like epilepsy. Enrolling in this study feels like a small contribution towards these efforts and I only hope that others will benefit from the findings.
I would encourage anyone who would like to enquire about this study to contact the team at the link below.
