At a glance
- What the study gets you
- Health checks and monitoring — no treatment given
- Type of study
- Observational (no treatment given)
- Time in hospital
- In-person visits at study sites — visit count not specified by the sponsor
- Drug or intervention
- Blood draw (other), Existing samples (other)
- How long the study runs
- Study runs about 113 months (dates as stated)
- About the drug or intervention
- Blood draw — other: Participation includes one visit for one blood draw per recruited patient. · Existing samples — other: Control DNA samples will be used that have been previously acquired in other studies.
- Patient visit burden
- Not specified by the sponsor
In plain English
This study, run by King's College London, is looking at the biology of Juvenile Myoclonic Epilepsy. This is a type of epilepsy that usually starts between the ages of 10 and 25 and causes jerky movements, often in the arms, in the early morning.
Who can take part
- You have a diagnosis of Juvenile Myoclonic Epilepsy based on agreed expert criteria
- Your jerky movements (myoclonus) started between the ages of 10 and 25
- Your seizures are mostly or only early morning jerky movements of the arms
- A brain wave test (electroencephalogram, EEG) shows generalised spike patterns with a normal background
- You are currently aged 10 to 40
Who may not be able to
- Your jerky movements only happen because of taking carbamazepine or lamotrigine
- Your EEG mainly shows activity coming from one area of the brain, or an abnormal background
- There is any sign of a worsening cause of myoclonus epilepsy, or of focal (partial) seizures
- You have a global learning disability
- You have a dysmorphic syndrome (a condition affecting physical development)
- You are not able to give informed consent
What taking part involves
- • Not stated — ask the trial team
Time commitment: Not stated — ask the trial team.
Plain-English summary (AI-generated) from registry data. Not eligibility advice — only the trial team can confirm whether you can take part. Use the eligibility checker to see how your health profile matches this trial.
- Type of study
- Observing health over time
- Ages
- 10 Years to 40 Years
- Who
- All
- Number of participants
- 1,000
- Started
- 2017-07-13
- Last checked
- 2025-08
Plain English Summary
What is this study?
- • Testing a new treatment for juvenile myoclonic epilepsy
- • Clinical study - 1,000 participants
- • The investigators are collecting genetic information through blood samples as well as clinical and EEG data from over 1000 people with Juvenile Myoclonic Epilepsy (JME) across the UK, Europe and North America
Who can take part?
- • Ages 10 Years to 40 Years
- • Diagnosed with juvenile myoclonic epilepsy
Where?
- • Liverpool - Walton Centre for Neurology and Neurosurgery
- • London - Royal London Hospital
- • London - St Thomas' Hospital
- • London - King's College Hospital NHS Trust
- • +1 more UK sites
This is a simplified summary. Always discuss with your doctor before making any decisions.
About This Trial
The investigators are collecting genetic information through blood samples as well as clinical and EEG data from over 1000 people with Juvenile Myoclonic Epilepsy (JME) across the UK, Europe and North America. This study will draw on both existing and new samples from JME patients. These will be compared to anonymised data from samples for 2000 controls. The goal of this study is to find the genetic cause of JME. Finding the cause will help create better treatments for JME, as well as improve patient outcomes by allowing us to detect it earlier.
More detail
Epilepsy is a common neurological disorder affecting 1% of the population. There are over 30 types of epilepsy, some common, some rare. Most epilepsies arise in childhood and have a genetic cause. Approximately 40% of patients have the common forms of Genetic Generalised Epilepsy (GGE), and the commonest GGE is "Juvenile Myoclonic Epilepsy" or JME. The goal of this study is to find the genetic cause for JME. The investigators will do this by comparing the genetic code in JME patients with that in people who do not have epilepsy. This study will use clues from their electroencephalograph or brainwave test that is used to help diagnose epilepsy. Participants will provide a single blood sample, along with permission to collect clinical data about their diagnosis and a copy of their clinical EEG. There is no direct benefit or risk to the research participants but the results from this study may help other people with epilepsy or brain impairments in the future. There is overwhelming evidence that JME is caused by changes in genetic code. These changes are likely to be found in more than just one gene and there may be more than one type of change. In order to find these changes, this study will look at a large number of people with JME and compare their genetic code with people who do not have epilepsy. Finding the causes of JME will lead to better understanding of its cause, new treatments, and tailoring of treatments according to a person's genetic make-up.
How this trial compares with your answers
Answer 2 more questions to improve match
What we know so far
Still need:
- • Tell us your age for better matching
- • Tell us your sex for better matching
Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.
Eligibility at a Glance
Key info
- Age: 10 Years - 40 Years
- Who can join: All genders
What the study is looking for
- ✓Diagnosis of Juvenile Myoclonic Epilepsy in accordance with Consensus criteria
- ✓Age of myoclonus onset 10-25 years
- ✓Seizures comprising predominant or exclusive early morning myoclonus of upper extremities
- ✓EEG interictal generalized spikes and/or polyspike and waves with normal background
- ✓Current age 10-40 years
Who cannot take part
- ✗Myoclonus only associated with carbamazepine or lamotrigine therapy
- ✗EEG showing predominant focal interictal epileptiform discharges or abnormal background
- ✗Any evidence of progressive or causing symptoms myoclonus epilepsy or focal seizures
- ✗Global learning disability
- ✗Dysmorphic syndrome
See the full criteria
Where Is This Study? (5 UK sites)
Walton Centre for Neurology and Neurosurgery
Liverpool L9 7LJ, United Kingdom
Royal London Hospital
London E1 1BZ, United Kingdom
St Thomas' Hospital
London SE1 9HT, United Kingdom
King's College Hospital NHS Trust
London SE5 9RS, United Kingdom
Swansea University
Swansea SA2 8PP, United Kingdom
How to Get in Touch
Deb K Pal, MD PhD
Sponsor contactCONTACT