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Do you have a VNS implant, or have you had a VNS in the past?
If so, you could help with research into whether VNS is an effective therapy for people living with r(20) syndrome.
Dr Ken Myers, paediatric neurologist clinician-scientist and assistant professor at Montreal Children’s Hospital, Canada, is an eminent member of our Ring20 International Scientific Advisory Board Together with the help of a Medical Student, Dr Myers is pulling together a case series to illustrate the patient experience in VNS use in people with r(20) – which has not been written up in medical literature to-date. The findings could help inform medical teams in their decision making of whether to offer VNS therapy to people with an r(20) syndrome diagnosis in the future.
Read on to find out more about this study and how you can take part…
AIM: To assess the efficacy of vagus nerve stimulation (VNS) in patients with r(20) and drug-resistant epilepsy
Why participate…
By understanding your real-world experiences of using a VNS, researchers can try to determine whether VNS is an effective treatment option for r(20) syndrome and, when, and for whom this therapy should be considered.
Am I eligible…
To be eligible to participate in this study you must:
- Have a confirmed diagnosis of ring chromosome 20
- Have a confirmed diagnosis of epilepsy
- Have had a vagus nerve stimulator implantation done at some point (need not be currently active)
- Be able to provide your consent; informed consent can be obtained from patient or caregiver.
Ideally you would speak English or French, but if not, the research team will endeavour to find a way to collect the data from you.
Will this benefit me…
The findings could help inform medical teams in their decision making.
The main benefits are to raise the awareness of how big a problem epilepsy in r(20) can be, and to emphasize the need for new therapies. More specifically, if we show a reasonably high rate of success with VNS, this will hopefully encourage clinicians to recommend this therapy earlier in the clinical course of r(20) patients.
What will I have to do…
Firstly, you’ll be asked to consent to the research database. Then a thorough medical history will be taken. You will be asked to answer some questions during a short telephone or video interview lasting about 20 minutes and then consent to the research team accessing your medical records (including your genetic results) via your doctor.
All data needs to be collected by the end of July 2025.
What will happen after…
Th research team aim to publish a research paper on the findings by the end of 2025 and present these at the Canadian League Against Epilepsy annual meeting (the biggest Canadian epilepsy conference) and hopefully at an international meeting such as the American Epilepsy Society annual meeting.
Any questions…
If you have any questions please contact the research team directly using the email below.
To request to participate in this study, or if you have any further questions, please contact
Dr Ken Myers: [email protected]
A webinar will be organised with Dr Myers so you can learn more about the study and ask questions.
Details will be posted here shortly…
A recording will be added to this webpage after.
