Skeletal muscle channelopathies: severe infantile phenotypes and sudden infant death syndrome (360G-Wellcome-209583_Z_17_A)


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. These will include: Web-based resources including links to short animations and/or videos, downloadable electronic/pdf versions of leaflets, contact details including telephone/email/website for support, written leaflets, flowcharts, infographs, text messaging and social media templates. The created resources will include but not necessarily be limited to topics such as: What happens after a child dies suddenly including mandatory requirements that families can expect to be met for review meetings Who they can contact for support e.g. appointed paediatrician, key worker, charity befrienders What the registry is and what tissues will be retained in the biobank What the registry hopes to achieve, how families can influence and benefit from this Consent options and processes

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Grant Details

Amount Awarded 16000
Applicant Surname Matthews
Approval Committee Research Enrichment, Public Engagement
Award Date 2019-09-30T00:00:00+00:00
Financial Year 2018/19
Grant Programme: Title Research Enrichment - Public Engagement
Internal ID 209583/Z/17/A
Lead Applicant Dr Emma Matthews
Partnership Value 16000
Planned Dates: End Date 2020-11-01T00:00:00+00:00
Planned Dates: Start Date 2019-11-04T00:00:00+00:00
Recipient Org: Country United Kingdom
Region Greater London