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Link to participate below:
The questionnaire will remain open for 4 weeks.
あなたの経験を共有することで、変化を起こすことに貢献できます。
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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自動翻訳
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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.
なぜこれを行うのですか？
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
これは私/私の子供にとって有益でしょうか?
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.
誰が資格がありますか？
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
何をしなければなりませんか？
You can participate by completing our online questionnaire ここ.
参加方法は以下の通りです:
- r(20) と同居する 18 歳以上の成人 – 両親のサポートの有無にかかわらず
- r(20)と一緒に暮らす人の親/介護者
- r(20)を患っている人の兄弟姉妹（18歳未満は親のサポートが必要）
- r(20)を患っている人の介護に携わっている近親者
どのような情報の提供を求められますか?
サポートのニーズを考慮して準備します。
- 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?
収集された情報はどうなりますか?
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.
同意とデータプライバシー
ご提供いただいた情報は、最大限の機密性をもって取り扱われます。匿名性を保ちながら、サポート サービスの更新や資金調達に役立てられます。プライバシーは保護され、機密性を確保し倫理ガイドラインに準拠するため、名前は使用されません。この調査への参加は完全に任意であり、理由を述べずにいつでも撤回する権利があることにご注意ください。
決定する前に詳細情報が必要ですか?
ご質問がある場合は、Ring20 チャンピオンにお問い合わせください。
