SUDC Registry & Research Collaborative
The SUDC Registry and Research Collaborative will assist families and the medicolegal death investigation community when these tragedies occur. Before you make your decision to participate in the SUDC Registry and Research Collaborative, however, you will need to know what the study is about, the possible risks and benefits, and what your participation would involve. You may also decide to discuss the study with your family, friends or doctor before making a decision. Please take your time to make your decision and please be sure to ask the study investigators any questions that you may have.
The Purpose of the SUDC Registry and Research Collaborative is...
The purpose is to increase the understanding of the characteristics, circumstances, medical histories and pathologies of children from ages 1 year through 18 years who have died suddenly and unexpectedly, and in some instances, without explanation. The SUDC Registry and Research Collaborative will analyze cases of sudden unexpected deaths in these children to understand risk factors and causes, and develop preventative measures.
By bringing together these rare cases, we hope to support grieving families with a greater understanding of their child’s death and support medical research efforts into all causes of Sudden Unexplained Death in Childhood.
The SUDC Registry and Research Collaborative will...
- Review the child’s death, medical and family history by our study pathologists (including forensic, pediatric, cardiac and neuropathologists) to determine whether a possible, probable or definite cause of death can be identified and pursue additional studies when indicated to assist in determining a specific cause of death.
- Perform neuroimaging and neuropathology evaluations as well as genetic analysis (whole exome sequencing platform) on the child who died. Additional genetic analyses will be undertaken for biological parents and symptomatic family members.
- Study the risks that lead to sudden deaths in children.
- Provide families with a review of their child’s death through a case review report.
- Identify at-risk individuals with the hopes of gaining knowledge to establish prevention strategies to reduce the chances of sudden unexplained death in the future.
Participation Requirements include...
- Participants must be a parent or guardian of a child from 1 year through 18 years of age who has died suddenly and unexpectedly where the cause is unknown or unclear, and where an investigation has occurred.
- Exclusion criteria: Cases of apparent suicide, apparent homicide or accident where the external cause was the obvious and only reason for death would be excluded.
Published Works From The SUDCRRC:
- Leitner, D.F., William, C., Faustin, A. et al. Proteomic differences in hippocampus and cortex of sudden unexplained death in childhood. Acta Neuropathol (2022).
https://doi.org/10.1007/s00401-022-02414-7 - Matthew Halvorsen, Laura Gould, Xiaohan Wang, Gariel Grant, Raquel Moya, Rachel Rabin, Michael J. Ackerman, David J. Tester, Peter T. Lin, John G. Pappas, Matthew T. Maurano, David B. Goldstein, Richard W. Tsien, Orrin Devinsky De novo mutations in childhood cases of sudden unexplained death that disrupt intracellular Ca2+ regulation Proceedings of the National Academy of Sciences Dec 2021, 118 (52) e2115140118; DOI: 10.1073/pnas.2115140118
https://www.pnas.org/content/118/52/e2115140118 - Leitner DF, McGuone D, William C, Faustin A, Askenazi M, Snuderl M, Guzzetta M, Jarrell HS, Maloney K, Reichard R, Smith C, Weedn V, Wisniewski T, Gould L, Devinsky O. Blinded Review of Hippocampal Neuropathology in Sudden Unexplained Death in Childhood Reveals Inconsistent Observations and Similarities to Explained Pediatric Deaths. Neuropathol Appl Neurobiol. 2021 Jun 23. doi: 10.1111/nan.12746. Epub ahead of print. PMID: 34164845.
https://pubmed.ncbi.nlm.nih.gov/34164845/ - Harowitz J, Crandall L, McGuone D, Devinsky O. Seizure-related deaths in children: The expanding spectrum. Epilepsia. 2021 Feb 14. doi: 10.1111/epi.16833. Epub ahead of print. PMID: 33586153.
- Crandall LG, Lee JH, Friedman D, et al. Evaluation of Concordance Between Original Death Certifications and an Expert Panel Process in the Determination of Sudden Unexplained Death in Childhood. JAMA Netw Open. 2020;3(10):e2023262. doi:10.1001/jamanetworkopen.2020.23262
- McGuone D, Gould Crandall L, Devinsky O. Sudden Unexplained Death in Childhood: A Neuropathology Review, Frontiers in Neurology, Vol 11 2020 DOI=10.3389/fneur.2020.582051
- Declan McGuone, Dominique Leitner, Christopher William, Arline Faustin, Nalin Leelatian, Ross Reichard, Timothy M Shepherd, Matija Snuderl, Laura Crandall, Thomas Wisniewski, Orrin Devinsky, Neuropathologic Changes in Sudden Unexplained Death in Childhood, Journal of Neuropathology & Experimental Neurology, , nlz136, https://doi.org/10.1093/jnen/nlz136
- Phoon CKL, Halvorsen M, Goldstein DB, et al. Sudden unexpected death in asymptomatic infants due to PPA2 variants. Mol Genet Genomic Med. 2019;e1008.
- Crandall LG, Lee J, Stainman R, Friedman D, Devinsky O., Sudden Deaths in Children: Potential Role of Febrile Seizures and Other Risk Factors, JAMA Open Network, April 2019
- Hoch MJ , Bruno MT, Faustin A, Cruz N, Mogilner A, Crandall L, Wisniewski T, Devinsky O, Shepherd T. 3-T MRI Whole Brain Microscopy Discrimination of Subcortical Anatomy, Part 2: Basal Forebrain AJNR Am J Neurodiol. In Press.
- Hoch MJ, Bruno MT, Faustin A, Cruz N, Crandall L, Wisniewski T, Devinsky O, Shepherd TM. 3T MRI Whole-Brain Microscopy Discrimination of Subcortical Anatomy, Part 1: Brain Stem.AJNR Am J Neuroradiol. 2019 Mar;40(3):401-407. doi: 10.3174/ajnr.A5956. Epub 2019 Jan 31.
- Gould Crandall, L. Inexplicable Child Deaths: Medicolegal Death Investigation Resources From the SUDC Foundation and the SUDC Registry and Research Collaborative Acad Forensic Pathol. 2017 7(2): xxiv-xxvi
- Crandall L, Devinsky O. Sudden Unexplained Death In Children. The Lancet Child and Adolescent Health, Vol 1, September 2017
- Halvorsen M, Petrovski S, Shellhaas R, Tang Y, Crandall L, Goldstein D, Devinsky O. Mosaic mutations in early-onset genetic diseases Genet Med. 2016 Jul;18(7):746-9. doi: 10.1038/gim.2015.155. Epub 2015 Dec 30. PMID: 26716362
SUDCRRC Members
Principal Investigator:
Orrin Devinsky, MD, Neurology
NYU Langone Health, NY, NY:
Daniel Friedman, MD, Neurology
John Pappas, MD, Genetics
Frank Cecchin, MD Pediatric Cardiology
Colin Phoon, MD, Pediatric Cardiology
Christopher William, MD PhD Neuropathology
Laura Gould (Crandall), MA, SUDC
Mikhail Kazachkov, MD, Ped Pulmonology
Sanjeev V. Kothare, MD, Pediatric Neurology
Jennifer Lighter, MD, Infectious Disease
Timothy Shepherd, MD, PhD, Neuroradiology
Matija Snuderl, MD, Neuropathology
Tom Wisniewski, MD, Neuropathology
Arline Faustin, MD Neuropathology
Rachel Rabin, MS Genetic Counseling
Dominique Leitner, PhD, Neuropathology
Mayo Clinic, Rochester, MN:
Peter Lin, MD, Forensic Pathology
Joseph Maleszewski, MD, Cardiac Pathology
Ross Reichard, MD, FP/Neuropathology
Michael Ackerman, MD, PhD, Pediatric Cardiology
Columbia University Medical Center, NY, NY:
David Goldstein, PhD, Genetics
Dale Hesdorffer, PhD, Neuroepidemiologist
Forensic Pathology Collaborators:
Tom Andrew, MD
Emily Duncanson, MD
Andrew Guajardo, MD
Melissa Guzzetta, MD
Nicole Jackson, MD, MPH
Heather Jarrell, MD
Kristen Landi, MD
Kelly Lear, MD
Katherine Maloney, MD
Declan McGuone, MBBCh
Keith Pinckard, MD, PhD
Kathryn Pinnerri, MD
Kristin Roman, MD
J.C. Upshaw Downs, MD
Alex K Williamson, MD
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