Actively Recruiting
SCN1A Horizons A Natural History Study of SCN1A-related Epilepsies in the United Kingdom
Led by NHS Greater Glasgow and Clyde · Updated on 2024-07-16
400
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are studying SCN1A-related epilepsies, including Dravet syndrome, in children and adults over a three-year period to understand seizure patterns, neurodevelopment, and behavior. The study compares different genetic types to see how seizure frequency and neurodevelopmental outcomes change over time. It aims to fill gaps in knowledge about disease progression, treatment effects, and the impact on patients and families across the lifespan. This observational study does not involve experimental treatments but focuses on collecting detailed data about the natural course of the condition. Participants will be assessed regularly using validated tools that measure seizures, cognitive development, adaptive behavior, and other health aspects. Assessments vary by age, with some occurring every six months and others yearly, continuing for up to three years. Participants will engage in scheduled evaluations including developmental tests like Bayley-4 and Wechsler scales, as well as behavior assessments. The study also tracks seizure frequency and status epilepticus events. Data is collected through virtual visits and clinical evaluations to monitor disease progression. The goal is to provide a comprehensive picture of SCN1A-related epilepsies and support future treatment research.
CONDITIONS
Brief Title
SCN1A Horizons A Natural History Study of SCN1A-related Epilepsies in the United Kingdom
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patient or legally authorised representative is willing and able to give informed consent or assent.
- Patient and parent/caregiver are willing and able to comply with all study requirements, including virtual visits.
- Participant has a confirmed pathogenic or likely pathogenic SCN1A genetic variant by genetic testing.
You will not qualify if you...
- Patient has any other significant disease or disorder that may put them at risk or affect their ability to participate, as judged by the Investigator.
AI-Screening
AI-Powered Screening
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Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or virtual)
Duration - Up to 3 years
Participants are observed over a period of up to three years to assess seizure frequency, neurodevelopmental changes, and behavioural characteristics associated with SCN1A-related epilepsies/Dravet syndrome.
Assessments every 6 months for participants under 7 years old and every 12 months for participants 7 years and older
Trial Site Locations
Total: 1 location
1
Royal Hospital for Children
Glasgow, United Kingdom, G51 4TF
Actively Recruiting
Research Team
K
Kirsty Hendry, PhD
A
Andreas Brunklaus, MD PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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