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Na této straně:
Link to participate below:
The questionnaire will remain open for 4 weeks.
Sdílením svých zkušeností přispějete ke změně.
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.
Přidejte titulky
Chcete-li sledovat videa s titulky, jednoduše klikněte levým tlačítkem myši na ozubené kolečko Nastavení (v pravém dolním rohu videa) a vyberte:
titulky/CC (1) VYPNUTO >
pak vyberte:
angličtina (automaticky generované)
Pro titulky v jiném jazyce jednoduše pokračujte výběrem:
titulky/CC (1) Angličtina (automaticky generované) >
pak vyberte:
Automatický překlad
a ze seznamu vyberte požadovaný jazyk.
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.
Proč to děláme?
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
Bude to pro mě/mé dítě přínosem?
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.
Kdo je způsobilý?
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
co budu muset udělat?
You can participate by completing our online questionnaire tady.
Zúčastnit se můžete jako:
- dospělá osoba ve věku 18 nebo více let žijící s r(20) – s podporou vašich rodičů nebo bez nich
- rodič(i)/pečovatel(é) někoho žijícího s r(20)
- sourozenec (sourozenci) někoho, kdo žije s r(20) – do 18 let věku je vyžadována podpora rodičů
- blízký člen rodiny zapojený do péče o někoho žijícího s r(20)
O jaké informace budu požádán?
Připravte se tím, že budete přemýšlet o svých potřebách podpory:
- 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?
Co se stane se shromážděnými informacemi?
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.
Souhlas a ochrana osobních údajů
S informacemi, které poskytnete, bude nakládáno s maximální důvěrností. Použije se k tomu, aby nám pomohl aktualizovat naše podpůrné služby a pomohl nám získat finanční prostředky s ochranou anonymity. Vaše soukromí bude chráněno a nebudou použita žádná jména k zajištění důvěrnosti a dodržování etických zásad. Vezměte prosím na vědomí, že účast v této studii je zcela dobrovolná a máte právo kdykoli odstoupit bez udání důvodu.
Chcete více informací, než se rozhodnete?
Kontaktujte svého šampiona Ring20 a zeptejte se na jakékoli otázky.
