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 is to increase the understanding of the characteristics, circumstances, medical histories and pathologies of children from ages 11 months 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.

• 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.

• Participants must be a parent or guardian of a child from 11 months 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:

• 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

Principal Investigator:
Orrin Devinsky, MD, Neurology

NYU Langone Medical Center, 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 Crandall, MA, SUDC
Mikhail Kazachkov, MD, Ped Pulmonology
Sanjeev V. Kothare, MD, Pediatric Neurology
Heather A. Lau, MD, Metabolic/Genetics
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
Declan McGuone,MBBCh Neuropathology
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
Kelly Lear, MD
J.C. Upshaw Downs, MD
Kristen Landi, MD
Kristin Roman, MD
Keith Pinckard, MD, PhD
Heather Jarrell, MD
Katherine Maloney, MD
Alex K Williamson, MD