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Link to participate below:
The questionnaire will remain open for 4 weeks.
Ao compartilhar suas experiências, você contribuirá para que a mudança aconteça.
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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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 que estamos fazendo isso?
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
Isso beneficiará a mim/meu filho?
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.
Quem é elegível?
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
O que terei que fazer?
You can participate by completing our online questionnaire aqui.
Você pode optar por participar como:
- um adulto com 18 anos ou mais vivendo com r(20) – com ou sem o apoio de seus pais
- pai(s)/cuidador(es) de alguém que mora com r(20)
- irmão(s) de alguém que mora com r(20) – apoio parental necessário para menores de 18 anos de idade
- um familiar próximo envolvido no cuidado de alguém que vive com r(20)
Que informações serei solicitadas a fornecer?
Prepare-se pensando nas suas necessidades de suporte:
- 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?
O que acontecerá com as informações coletadas?
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.
Consentimento e privacidade de dados
As informações que você fornecer serão tratadas com a máxima confidencialidade. Ele será usado para nos ajudar a atualizar nossos serviços de suporte e para nos ajudar a arrecadar fundos, com anonimato protegido. Sua privacidade será protegida e nenhum nome será usado para garantir a confidencialidade e cumprir as diretrizes éticas. Observe que a participação neste estudo é totalmente voluntária e você tem o direito de desistir a qualquer momento sem fornecer um motivo.
Quer mais informações antes de decidir?
Entre em contato com seu Campeão Ring20 para tirar qualquer dúvida que possa ter.
