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Refer A Family
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.
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
We would like to express our deepest condolences to you and your family during this time. We understand what a confusing and tragic time this is for you and want to help. If you would like to learn more about the resources available to you, including the SUDC Registry and Research Collaborative, please contact us by:
and would like to refer a family or learn more about The SUDC Registry and Research Collaborative, please contact SUDC Director, Laura Crandall by:
According to the Center for Disease Control (CDC) 2018 statistics, those affected by sudden unexplained death occurred in:
The incidence of SUDC in toddlers is about 1.4 per 100,000 children and the 5th leading cause of death.*
*based on codes R96-99 from the CDC Wonder Database (2018)
This web page content is approved by the NYU Langone Medical Center's Institutional Review Board.