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 |