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En esta página:
Link to participate below:
The questionnaire will remain open for 4 weeks.
Al compartir tus experiencias, contribuirás a que se produzcan cambios.
Webinar on managing SUDEP risk in r(20)
We will be hosting a webinar for families explaining SUDEP, the risks and how to minimise them.
The webinar is schedule for 16th April 2026 18:30 – 19:30 UK time.
The recording is available below.
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subtítulos/CC (1) APAGADO >
luego seleccione:
Inglés (generado automáticamente)
Para subtítulos en otro idioma simplemente continúe seleccionando:
subtítulos/CC (1) Inglés (generado automáticamente) >
luego seleccione:
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NEW!! Research Study on understanding SUDEP and managing risk
Sudden Unexpected Death in EPilepsy (SUDEP) awareness and mortality risk factors among individuals with ring chromosome 20 syndrome is not a subject widely discussed by families or by their medical teams – and yet, understanding risk and how to reduce risk is extremely important.
This new study is kindly supported by Philippe Ryvlin, Professor of Neurology in Lausanne, Switzerland and Alex Grundmann, Academic Clinical Fellow at the Royal Victoria Infirmary, Newcastle-upon-Tyne, UK – both are experts in this field.
¿Por qué estamos haciendo esto?
We want to hear from as many families as possible to better understand SUDEP awareness and mortality risk factors among individuals with ring chromosome 20 syndrome.
By collecting experiences directly from individuals or their parents/caregivers we want to see if your experiences can add any new knowledge to what has been documented about understanding SUDEP and mortality risk in r(20) syndrome.
Making connections, supporting families
¿Esto me beneficiará a mí o a mi hijo?
By sharing your insights, you will contribute to improving how and when SUDEP risk is discussed with families with a Ring Chromosome 20 diagnosis – and what can be done to minimise risk.
The knowledge gained from this study will serve to raise awareness among the wider population and potentially improve support and care for individuals affected by r(20) syndrome.
¿Quien es elegible?
The study is open to all individuals and their families who are living with a ring chromosome 20 syndrome worldwide.
Our Ring20 Champions can help translate the questions and your answers in other languages including: French, Dutch, Italian, Portuguese, Japanese, Spanish, German
¿Qué tendré que hacer?
You can participate by completing our online questionnaire aquí.
Puedes elegir participar como:
- un adulto de 18 años o más que vive con r(20) – con o sin el apoyo de sus padres
- padre(s)/cuidador(es) de alguien que vive con r(20)
- hermano(s) de alguien que vive con r(20): se requiere apoyo de los padres para <18 años de edad
- un familiar cercano involucrado en el cuidado de alguien que vive con r(20)
¿Qué información se me pedirá que proporcione?
Prepárese pensando en sus necesidades de apoyo:
- Recent seizure History: How many tonic clonic seizures have you experienced in the last 12 months? What other seizure types have you experienced in that period?
- Living Situation and Night-time Supervision: Do you sleep alone in the house, in your own room with other family members or does your parent/caregiver sleep in the same room as you?
- Treatment & Adherence: What treatments are you currently taking to control your seizures and do you take them regularly?
- Medical Risk & Health Factors: Do you use rescue medication and how often have you had to use this in the last 12 months?
- SUDEP Awareness & Impact: Has SUDEP been discussed with you and if so, how clear was the infromation?
- Safety Measures at Home: Which safety measures are available at home?
- Community Priorities: What would help you most to understand or better manage SUDEP?
¿Qué pasará con la información recopilada?
This new study is kindly supported by Philippe Ryvlin, Professor of neurology in Lausanne, Switzerland and Alex Grundmann, Academic Clinical Fellow at the Royal Victoria Infirmary, Newcastle-upon-Tyne, UK – both are experts in this field.
We aim to publish a new research paper on the risk factors affecting mortality including the risk of SUDEP in r(20) syndrome based on the findings of this study.
Consentimiento y Privacidad de Datos
La información que proporciones será tratada con la máxima confidencialidad. Se utilizará para ayudarnos a actualizar nuestros servicios de soporte y para ayudarnos a recaudar fondos, con el anonimato protegido. Se protegerá su privacidad y no se utilizarán nombres para garantizar la confidencialidad y cumplir con las pautas éticas. Tenga en cuenta que la participación en este estudio es completamente voluntaria y usted tiene derecho a retirarse en cualquier momento sin dar ningún motivo.
¿Quieres más información antes de decidirte?
Póngase en contacto con su Ring20 Champion para hacer cualquier pregunta que pueda tener.
