SCN1A Horizons

The SCN1A Horizons UK-wide study team came together on Friday for our first Steering Committee meeting. Adult & Paediatric experts, data scientists and @DSUK came together for a great day of learning and planning the future of the study💡 Led by Chief Investigator @a_brunklaus

Following our UK-wide launch in April 2024, we have officially recruited 50 participants to the SCN1A Horizons study! Looking forward to welcoming many more families and study sites in coming weeks and months!

Neuropsychology assessments are a key part of #SCN1AHorizons Natural History study. By profiling the neurocognitive development over time, these assessments will help inform knowledge of #DravetSyndrome and #SCN1A #epilepsy beyond the clinical perspective: youtu.be/NbCz8xcSwYA

Are in London or South England & caring for someone with #DravetSyndrome or #SCN1Aepilepsy? #SCN1AHorizons is enrolling at Evelina, Great Ormond Street, Cambridge, Barts, Oxford & St Georges. Watch our video with @MAbsoud to find out more youtu.be/-jj_uhYsRcE. @SCN1AHorizons

@SCN1AHorizons officially open at @Leeds_Childrens - if you have a patient with an SCN1A mutation and seizures in North, East or West Yorkshire and they are not with the Paediatric Neurology service please let us know.

Chief Investigator of SCN1A Horizons, Prof. Brunklaus, tells us more about this natural history study and why it is so important🧐💡 youtube.com/watch?v=x6MzSa…

Some of the Horizons team were delighted to take the opportunity to meet in Manchester yesterday. A day of sharing ideas & insightful presentations as we soon progress to expand recruitment across the UK 🧠💡🤝

📢 NEWS: The @SCN1AHorizons Natural History Study recruits first patients 👍 The study is anticipated to be a milestone in transforming understanding of SCN1A epilepsies, including #DravetSyndrome. Details 👉 dravet.org.uk/news/SCN1A-Hor… SCN1AHorizons@glasgow.ac.uk @a_brunklaus

SCN1A Horizons has officially recruited its first participant today… first 3 participants in fact! Thank you so much to the wonderful children and their families, and the amazing support from the team @GlasgowCRF 🌟 Looking forward to welcoming lots more participants.

We are delighted to attend the @DravetUK 2023 Conference today and announce the recruitment launch for SCN1A Horizons! We will recruit our first participant in Glasgow on Monday!