About Us
History of SUDCRRC
The SUDC Registry and Research Collaborative was created in 2014 at NYU Langone Health, by Principal Investigators Dr. Orrin Devinsky and Laura Gould. Dr. Devinsky is a pediatric neurologist known worldwide for his dedication to patient care and research of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). Laura’s history of SUDC is personal. After the unexplained death of her 15-month old daughter, Maria, in 1997, she initiated the first SUDC research in the U.S., coauthored the first definition of SUDC, cofounded the first organization devoted to SUDC, and advocated for U.S. state and federal legislation to support SUDC efforts.
What We Do
The primary goal of the SUDCRRC is to understand and advance all research efforts of SUDC. Our research design recognizes that collaborations with families, the medicolegal death investigation system, and broad representation of specialties across the medical community are crucial to meeting this goal.
The SUDCRRC links researchers at NYU Langone Health, the Children’s Hospital of Pennsylvania, the Mayo Clinic (MN), Monash University (Australia), forensic pathologists nationwide, and crucial medical examiner and coroner partners to identify victims of SUDC and advance research efforts.
When a child is enrolled in the SUDCRRC, we perform a detailed multidisciplinary review. This includes: 1) a detailed family interview, 2) genetic analysis of the child and both parents, 3) review of the child’s death investigation, medical, and family history to determine whether a possible, probable, or definite cause of death can be identified, and 4) performance of additional studies that may assist in identifying a specific cause of death.
Team Members
Co-Principal Investigators
Orrin Devinsky, MD
Laura Gould, MSc, MA, PT
NYU Langone Health, New York, NY
Frank Cecchin, MD, Pediatric Cardiology
Arline Faustin, MD, Neuropathology
Daniel Friedman, MD, Neurology
Mikhail Kazachkov, MD, Ped Pulmonology
Kristen Landi, MD, Forensic Pathology
Dominique Leitner, PhD, Neuropathology
Sandra Mendoza, MA, Biorepository
Navneet Narula, MD, Cardiac Pathology
John Pappas, MD, Genetics
Colin Phoon, MD, Pediatric Cardiology
Rachel Rabin, MS, CGC, Genetic Counseling
Alcibiades Rodriguez, MD, Neurology, Sleep Medicine
Henry Rusinek, PhD, Radiology
Christopher William, MD, PhD, Neuropathology
Alex Williamson, MD
Thomas Wisniewski, MD, Neurology
Mayo Clinic, Rochester, MN
Michael Ackerman, MD, PhD
David Tester
Children’s Hospital of Philadelphia, Philadelphia, PA
Katie Rose Sullivan, MS, CGC
Ingo Helbig, MD
Sarah Ruggiero, MS, CGC
Monash University, Clayton, Victoria, Australia
ZongYuan Ge, PhD
Patrick Kwan, PhD
David Mehta, PhD
Terrance O’Brien, MD
Hugh Simpson, MD
Shobi Sivathamboo, PhD
External Forensic, Cardiac, and Neuropathology Collaborators
Tom Andrew, MD
Nicole Croom, MD, MPH
Brittany DePasquale, MD
Emily Duncanson, MD
Andrew Guajardo, MD
Melissa Guzzetta, DO
Nicole Jackson, MD
Heather Jarrell, MD
Alison Krywanczyk, MD
Kelly Lear, MD
Katherine Maloney, MD
Declan McGuone, MBBCh
Keith Pinckard, MD, PhD
Kathy Pinneri, MD
Kristin Roman, MD
NYU Langone Health
Comprehensive Epilepsy Center
223 E 34th St, Ground Floor
New York, NY 10016
The SUDCRRC is approved by the NYU Langone Health’s Institutional Review Board (i14-01061).