SUDC UK is a registered, national charity dedicated to raising awareness, funding research and supporting families affected by Sudden Unexplained Death in Childhood (SUDC).
SUDC UK supports research in 3 ways:
1) SUDC UK provides medical research grants to projects endorsed by the SUDC Foundation’s Scientific Advisory Board and approved by the SUDC UK Board of Trustees.
2) SUDC UK supports projects by advocating for the needs of families and, with consent, sharing family feedback with researchers to further understanding of family experience.
3) SUDC UK shares website information for relevant, ethically approved SUDC-focused projects with registered families in case they would like to learn more. Families can then make an informed decision as to whether they would like to enroll in projects.
Current SUDC UK activities
SUDC UK is proud to support The SUDC Registry and Research Collaborative (SUDCRRC).
- The SUDCRRC currently forms the largest global database of SUDC deaths. The project analyses cases of sudden unexpected deaths in children between 11 months and 18 years to understand risk factors and causes, and develop preventative measures.
- Funding is required to offset direct costs associated with family enrollment, research co-ordinators, neuropathology, neuroimaging and infrastructure. To date, SUDC UK has granted over £213,000 to the SUDCRRC in line with our vision of helping to make SUDC predictable and preventable.
- More information can be found on the SUDC Foundation website and the New York University Langone Institute website where the project is led by Dr Orrin Devinsky. After reading this information, please contact us if you would like to learn more about this project.
Since April 2019 data from all child deaths in England has been collated in a National Child Mortality Database (NCMD). This database is statuatory requirement, collecting ~1000 data points on every child death to identify trends and share learns, so that actions can be taken locally and nationally to prevent deaths in the future. SUDC UK is a member of the NCMD Public Engagment Network and a member of the NCMD SUDIC Working Group.
SUDC UK is an active member of the UK Child Death Registry Steering Group. A group of professional experts on child death and related charities that hope to form a groundbreaking national registry, connected with the NCMD, to improve and increase research into unexpected sudden death. We hope this project will also positively affect medical education, international scientific collaboration and key elements of the child death process, such as tissue retention. For more information, please see the related publication.
In September 2020 SUDC UK collaborated with the Lullaby Trust to research family experience of the Coroner’s service via a survey, and submit evidence to the UK Parliament Justice Select Committee’s Inquiry into the Coroner Service. The inquiry aimed to “seek to identify the extent of continuing problems with the Coroner Service and to recommend what can be done to improve the situation” (Chair of the Justice Committee). The submission was made possible by registered families generously submitting feedback on their experience. It was supported by SANDS and Child Bereavement UK. SUDC UK is also a member of the All-Party Parlimentary Group on Bereavement and supports their efforts to understand and improve bereavement services accross the UK.
SUDC UK supported the 100,000 Genome project by connecting with scientists, linking professionals from the UK registry team with Genomics England and informing families about the rare disease pilot protocol. For information, please see the Genomics England Website.
In addition to the SUDCRRC, there are additional research opportunities that some of our registered families have participated in as a natural progression from their family screening investigations. In particular, those supported by CRY, a UK-based charity focused on young sudden cardiac death. There are also currently sudden death registries in the US and France with attached research projects, a SIDS-focused collaboration between the US and Australia and SIDS-focused projects supported by the Lullaby Trust. A family can enrol in multiple research projects, if it is possible and they so wish. If you are interested in receiving the contact information for these projects, please contact us.
The SUDCRRC is currently the only project supported by SUDC UK because our trustees believe that by focusing on older deaths (11 months – 18 years), and collating data from a high number of cases across the world, it will provide statistically significant insight into why children specifically of this age die without reason, thus supporting our vision… for SUDC to be predictable and preventable.
As our charity grows, we are, however, excited to learn about and discuss any future projects requiring support.
We would like to hear from you
Please contact us if:
– you are a professional interested in learning more about SUDC UK research grants or you would like to discuss recruitment or funding for upcoming projects.
– you are a family interested in enrolling in SUDC research. If you are not registered with SUDC UK, please do so first here