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På denne siden:
Link to participate below:
The questionnaire will remain open for 4 weeks.
Ved å dele dine erfaringer vil du bidra til å få endring til å skje.
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.
Hvorfor gjør vi dette?
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
Vil dette gagne meg/barnet mitt?
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.
Hvem er kvalifisert?
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
Hva må jeg gjøre?
You can participate by completing our online questionnaire her.
Du kan velge å delta som:
- en voksen på 18 år eller eldre som bor med r(20) – med eller uten foreldrenes støtte
- en forelder/foresatte til noen som bor med r(20)
- søsken(e) til noen som lever med r(20) – foreldrestøtte kreves for <18 år
- et nært familiemedlem involvert i omsorg for noen som lever med r(20)
Hvilken informasjon vil jeg bli bedt om å oppgi?
Forbered deg ved å tenke på dine støttebehov:
- 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?
Hva vil skje med informasjonen som samles inn?
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.
Samtykke og personvern
Informasjonen du oppgir vil bli behandlet med den største konfidensialitet. Den vil bli brukt til å hjelpe oss med å oppdatere støttetjenestene våre og hjelpe oss med å samle inn penger, med anonymitet beskyttet. Personvernet ditt vil bli beskyttet, og ingen navn vil bli brukt for å sikre konfidensialitet og for å overholde etiske retningslinjer. Vær oppmerksom på at deltakelse i denne studien er helt frivillig, og du har rett til å trekke deg når som helst uten å oppgi grunn.
Vil du ha mer informasjon før du bestemmer deg?
Kontakt din Ring20 Champion for å stille spørsmål du måtte ha.
