DSUK Surveys: Impact of COVID-19 in Dravet Syndrome

In collaboration with Professor Helen Cross and Professor Sanjay Sisodiya and colleagues, DSUK conducted two surveys among families living with Dravet Syndrome (in June-July 2020 and February 2021) to explore the impact of COVID-19. 

The results from these surveys have subsequently been published in peer-review journals. See below for more information and links to the full scientific papers.

The impact of SARS-CoV-2 vaccination in Dravet Syndrome: A UK survey

In February 2021, DSUK conducted a survey to gather information about the SARS-CoV-2 vaccination (coronavirus or COVID-19 vaccination), in people with Dravet Syndrome (DS).  Families of eight people with DS, who had received either the Pfizer/BioNTech or Oxford/AstraZeneca vaccine, responded.  Their ages ranged from 16 – 44 years. The full findings from the survey are published in peer-review medical journal, Epilepsy & Behaviour, and can be viewed online here.

Key findings from the survey include:

The impact of COVID-19 in Dravet syndrome: A UK survey

In June/July 2020, DSUK conducted a survey to understand the risks, impact and outcome of COVID-19 in people affected by Dravet Syndrome. 

An anonymous cross-sectional online survey was conducted between 17th June and 13th July 13 2020, with responses from 116 parent/carers of children (74%) and adults (26%) with Dravet Syndrome. The full findings from the survey are published in peer-review medical journal, Acta Neurologica Scandinavica, and can be viewed online at https://doi.org/10.1111/ane.13405.

Key findings from the survey include:

Results from US caregiver survey - COVID-19 vaccination for children/adults with Dravet Syndrome

The DSF study was conducted among 120 caregivers of children/adults with Dravet Syndrome (aged 11-42) who had received at least one dose of a COVID vaccine. No side effects were reported in 55% of individuals after the first dose and 50% of individuals after the second dose. The most commonly reported symptoms were lethargy and injection site soreness. The majority (~90%) of individuals did not experience increased seizures after a dose of the vaccine.

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