Previous SUDC UK funded research
SUDCRRC
SUDC UK co-funded over £470,000 to the SUDCRRC through restricted grants to our affiliate, The SUDC Foundation between 2018 and 2023.
The Project
The Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC) is a multisite research collaborative created at NYU Langone Health in 2014. SUDC UK funds supported detailed phenotyping, genetic analyses and blinded multidisciplinary case reviews, as well as creation of SUDC biorepository.
Impact – How will this project help SUDC prevention?
The centre of excellence studies sudden unexplained deaths in childhood (SUDC) with a team of experts from paediatrics, neurology, cardiology, radiology, pathology, and infectious disease to better understand and prevent these tragedies. SUDC is rare and through global recruitment of cases and multicentre collaboration this project has published a significant proportion of the current evidence base for SUDC.
Publications
Please see the project website – SUDC Research and Registry Collaborative
2025 Webinar from the SUDCRRC team
Lead Investigator
SUDCRRC Co-Principal investigators: Laura Gould, Research Assistant Professor and Orrin Devinsky MD, Professor of Neurology, Neuroscience, Psychiatry & Neurosurgery.
Video Recordings of Sudden Deaths in Toddlers
Fully funded by SUDC UK – £31,766
The Project
This project from the SUDCRRC at NYU Langone Health revealed analysis of audio-visual recordings in seven toddlers who tragically died unexplained sudden deaths. Most had no medical history of seizures, yet most of the recordings showed seizure activity close to the time of death. The researchers say that this evidence strongly implicates that the deaths were related to convulsions, suggesting that seizures may play a significant role in these unexpected deaths.
SUDC UK understands that this information may be triggering, particularly for SUDC-bereaved families. Please know that we are here in understanding and support. Please reach out to your local support system or call the Samaritans on 116 123 if you ever feel you need urgent help.
Impact – How has this project helped SUDC prevention?
Nikki Speed, CEO SUDC UK shares
“Many families including my own have spent years, decades even, with absolutely no idea why or how their seemingly healthy child died suddenly. We may never know for certain. However, SUDC UK is proud to have funded this new research – it takes an important step forward in the search for answers. Could seizures have played a role in many SUDC deaths, even those where there was no medical history? And if they did, how exactly did they contribute when they are usually harmless?
This project was highlighted nationally in BBC Panorama (Jan 2024, Sudden Deaths: The Search For Answers) and made news headlines across the world, supporting greater awareness of SUDC and advocating for urgent research into febrile seizures and SUDC.
Publications
Gould L et al, Neurology, 2024
Lead Investigator
Laura Gould MSc, Research Assistant Professor, NYU Langone Health
Febrile Seizure Characteristics in Sudden Unexplained Death in Childhood (SUDC)
Fully funded by SUDC UK – £40,430.
Hannah Johnston, our Communications Manager, also had a significant impact on the successful recruitment of participants.
The Project
This project was a case-controlled analysis of children with febrile seizures and subsequent sudden death, versus living controls from December 2021 to June 2023 through a 10-minute anonymous online survey. We enrolled parents of children, living or deceased, whose child had experienced a febrile seizure from age six months to six years. Subjects were excluded if the child had another type of seizure or if parents had not witnessed a febrile seizure. 381 surveys were completed in the study.
Impact – How has this project helped SUDC prevention?
In the published paper the authors explain that “exploratory analysis of FS characteristics suggests an increased risk of sudden death related to early age of FS onset, development concerns, and parasomnias, as well as brief unresponsiveness (less than one minute) and absence of drooling during the FS.
Further analysis identified that even after adjustment for other characteristics, those with FS + SUDC rarely awoke often (more than two times) during the night, supporting possible differences in arousal mechanisms in children with FS and subsequent sudden death.”
This project is the first to help narrow down which children who experience febrile seizures may be at higher risk of SUDC but further work is needed in larger and prospective studies to confirm these findings.
Publications
Gould L et al, Paediatric Neurology, 2025
Lead Investigator
Laura Gould MSc, Research Assistant Professor, NYU Langone Health