Current research projects

The incidence of SUDC remains stable with 40 children affected every year. SUDC UK invests the majority of it’s income into research with the aim of saving children’s lives. We understand the urgency and do all we can to expedite progress. 

For SUDC prevention we must understand which children are at risk, develop measures that will prevent their deaths and successfully communicate and implement these by working with professionals and parents. Our current research strategy is making impactful progress in the first phase of this journey. 

PIONEER SUDC Study

A PopulatION-based invEstigation to Reduce Sudden Unexplained Deaths in Childhood.

This 2025-2027 UK-based study involving many national experts and families will review deaths to further our knowledge of SUDC. 

It will analyse detailed information from the National Child Mortality Database and associated documents (e.g.  post mortem reports and available genetic reports) to realise the potential for preventative measures. To do this, the following 4 objectives will be met:

  • Review all fully reviewed unexpected child deaths (1-17 years inclusive) in England and derive a standardised template to delineate between explained and unexplained deaths. 
  • Build a model that identifies predictors of SUDC relative to unexpected, explained child deaths. 
  • Investigate subcategories of SUDC and how they align with explained deaths. 
  • Conduct qualitative interviews with bereaved parents via SUDC UK to establish future National Child Mortality Database (NCMD) questions and build an evidence-base for preventative measures. 

The Project 

With around 40 deaths a year in the UK, SUDC is rare but devastating, and if researchers want to understand why these children die, they will need to investigate subgroups of these deaths. Success in reducing SIDS over the last 30 years is built on a defined population, collecting data on all unexpected infant deaths so researchers can understand the difference between deaths that are explained or unexplained. Professor Blair and his team will adopt the same approach using five years of data from England (2020 to 2024) collected by the NCMD. They anticipate studying over 900 reviewed unexpected child deaths of which at least 130 meet the definition of SUDC.

They will clean the data and use an expert panel to develop a common guide of what defines an explained and unexplained death. They will compare these two groups and subgroups within them to identify background characteristics and possible risk factors for SUDC. They will talk to bereaved parents via SUDC UK to understand what future questions need to be asked. All this will feed back into the future NCMD data collection as a rolling programme to build an evidence-base for a risk-reduction campaign.

The Team

Lead Investigator Peter Blair, Professor of Epidemiology and Statistics, University of Bristol 

An esteemed researcher, Professor Pete Blair Chaired the global stillbirth and SIDS organisation, ISPID, for many years. Alongside his colleague, Peter Fleming CBE, his research has been integral in helping to reduce unexpected sudden infant deaths by over 80% since the 1990s.  

This project also includes co-investigators who are leaders in their respective fields of child death:  

Paediatrics  

  • Peter Fleming CBE, Emeritus Professor of Infant Health & Developmental Physiology at University of Bristol. 
  • Dr. Joanna Garstang, University of Birmingham and Designated Doctor for Child Death, Birmingham & Solihull Integrated Care Board 
  • Dr. James Fraser, Bristol Royal Hospital for Children  

Pathology  

    • Paediatric pathology – Professor Marta Cohen OBE, Sheffield Children NHS Foundation Trust
    • Cardiac pathology – Professor Mary Sheppard, City St George’s Medical School, London

    Neurology 

      • Dr. Rohini R Rattihalli, Oxford University Hospitals NHS Foundation Trust

        Behavioural Scientist with expertise in risk factors reducing mortality

        • Dr. Anna Pease, University of Bristol 

        National Child Mortality Database 

        • Professor Karen Luyt, University of Bristol and NCMD Director 
        • Sylvia Stoianova, NCMD Deputy Director

        The project steering group includes more national experts and SUDC parent, Nathan Robinson.  

        Impact- How will this project help SUDC prevention? 

        This project involves a group of co-investigators and a steering group who are key national experts with a track record of excellent research and influencing national policy. The project outcomes will not only further understanding of which children may be at risk of unexplained death but will also help SUDC UK advocate for the national changes in infrastructure, medical or public health guidance and funding that we need for the next steps necessary to save lives.

        Publications

        • None at this time. Project launched in July 2025
        • Project presented at ISPID Conference 2025

        Get involved 

        Would you like to tell PIONEER what SUDC research is important to you? To learn more about how you can support this project through funding or family participation, please contact info@sudc.org.uk 

           

          Localised Transcriptomics in the Hippocampus of SUDC Cases

          Over the last 20 years, an association was identified between febrile seizures and SUDC, with approximately one third of affected children having a history of febrile seizures (www.sudc.org.uk/seizures). SUDC UK’s research strategy includes investment in better understanding this association.

          This two-year scientific project from the SUDC Research and Registry Collaborative (SUDCRRC) centre of excellence aims to further understanding about gene expression in the hippocampus, an area of the brain thought to be associated with seizure activity and unexpected deaths.

          To do this, the following objectives will be met:

          • Identify molecular mechanisms at RNA level in the hippocampus in:
            1. children affected by SUDC who had a history of febrile seizures
            2. children affected by SUDC without a febrile seizure history
          • Characterise differences in signalling pathways and cell type specific gene expression
          • Confirm significant findings at the protein level by histology at the single cell and regional levels

          The Team

          Lead Investigator Dr. Dominique Leitner, NYU, Senior Research Scientist (Neuroscience)

          • SUDCRRC Co-Principal investigators: Laura Gould, Research Assistant Professor and Dr. Orrin Devinsky MD, NYU Professor of Neurology, Neuroscience, Psychiatry & Neurosurgery.
          • Thomas Wisniewski, NYU, Neurologist and neuropathologist.
          • Christopher William, NYU. Neuropathologist with over 20 years of experience in paediatric and adult brain dissection and autopsy neuropathology.

          Impact – How will this project help SUDC prevention?

          This approach builds on our previous work and aims to enhance hippocampal characterisation and understanding, so that in time the SUDC risk can be reduced.

          Publications

          • None at this time. Project launched in June 2025
          • Project presented at ISPID Conference 2025

           

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