Skeletal muscle channelopathies: severe infantile phenotypes and sudden infant death syndrome


  • Dr Emma Matthews

    University College London, United Kingdom

Project summary

We will have achieved a comprehensive understanding of not only the most appropriate ways and times to discuss inclusion in a SUDIC registry with bereaved families but how we can better inform and support them through the death of their child and the multi-disciplinary investigation that follows a sudden death.

We will have established:

- What families understand now about the process that takes place when a child dies suddenly and unexpectedly

- How/if they received sign-posting information

- Where there are major gaps in information

- What support professionals and charities may require to improve this - What information families would like to receive regarding the registry, when and how.

As a result of this engagement with a wide range of stakeholders we will have collectively designed multiple formats for sharing information, research outputs and sign-posting to ensure all partners are fully engaged.