SUDC Registry and Research Collaborative

July 2016

The SUDC Registry and Research Collaborative (SUDCRRC) was created at NYULMC in October of 2014.  It is a multisite collaborative of NYULMC, Columbia University and the Mayo Clinic.  Over its first year and a half, the SUDCRRC has developed an infrastructure to support this multifaceted and novel project.

The purpose of the SUDCRRC 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 analyzes cases of sudden unexpected deaths in these children to understand risk factors and causes, and develop preventative measures.

To date, it has enrolled 68 families who have lost a child over the age of 12 months to a sudden and unexplained death.  The average age of the child was 31 months and 60% of the children were boys.

The study has three main components and includes:

  1. Comprehensive Case Review by Panel of Forensic Pathologists: Review of 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 whether additional studies might be helpful in determining a specific cause of death.

  2. Neuroimaging (MRI) and Neuropathology: On whole brain specimens when available

  3. Genetic Analysis: (whole exome sequencing) on the child who died, the child's biological parents and any relatives with a cardiac or neurological condition.

Publications to Date:

  • Halvorsen M, Petrovski S, Shellhaas R, Tang Y, Crandall L, Goldstein D, Devinsky O. Mosaic mutations in early-onset genetic diseases. Genet Med. 2015 Dec 30. doi: 10.1038/gim.2015.155
  • Hesdorffer DC, Crandall L, Friedman D, Devinsky O; Sudden unexplained death in childhood: A comparison of cases with and without a febrile seizure history. Epilepsia. 2015 Aug; 56(8): 1294-300. doi: 10.1111/epi.13066.Epub 2015 Jun 29