The Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCCRC) was created in 2014 at NYU Langone Health, by principal investigators Orrin Devinsky, MD, and Laura A. Gould, MSc.

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). Ms. Gould’s history of SUDC is personal. After the unexplained death of her 15-month old daughter, Maria, in 1997, she initiated the first sudden unexplained death in childhood, or SUDC, research in the United States, coauthored the first definition of SUDC (Krous et al., 2005, Pediatr Dev Pathol), cofounded the first organization devoted to SUDC, and advocated for U.S. state and federal legislation to support SUDC efforts.

The SUDCRRC is approved by NYU Langone Health’s Institutional Review Board (i14-01061).

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, 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 the following:

• a detailed family interview
• genetic analysis of the child and both parents
• a 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
• a performance of additional studies that may assist in identifying a specific cause of death

Team Members

SUDCRRC members include the following.

Co-Principal Investigators

Orrin Devinsky, MD
Laura A. Gould, MSc

NYU Langone Health

Frank Cecchin, MD
Pediatric Cardiology

Arline Faustin, MD
Neuropathology

Daniel Friedman, MD
Neurology

Mikhail Kazachkov, MD
Pediatric Pulmonology

Kristen Landi, MD
Forensic Pathology

Dominique Leitner, PhD
Neuropathology

Sandra Mendoza, MA
Biorepository

Navneet Narula, MD
Cardiac Pathology

John G. Pappas, MD
Genetics

Colin K, Phoon, MD
Pediatric Cardiology

Rachel Rabin, MS, CGC
Genetic Counseling

Alcibiades J. Rodriguez, MD
Neurology, Sleep Medicine

Henry Rusinek, PhD
Radiology

Christopher M. William, MD, PhD
Neuropathology

Alex Williamson, MD

Thomas M. 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
Daniel Gallego, MD
Andrew Guajardo, MD
Melissa Guzzetta, DO
Nicole Jackson, MD
Heather Jarrell, MD
Alison Krywanczyk, MD
Kelly Lear, MD
Tara Mahar, MD
Katherine Maloney, MD
Declan McGuone, MBBCh
Keith Pinckard, MD, PhD
Kathy Pinneri, MD
Rebecca Asch-Kendrick, MD