Skeletal muscle channelopathies: severe infantile phenotypes and sudden infant death syndrome
Year of award: 2019
Grantholders
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.