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Clinical Trial Summary

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.


Clinical Trial Description

- 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 whether additional studies might be helpful in determining a specific cause of death. - For case investigations that are open/active, the registry offers cardiac pathology, and neuroimaging/neuropathology consultations. - For those cases determined to be unexplained/undetermined- access to genetic analysis (whole exome sequencing) when viable samples are available. Additional genetic analysis opportunities for biological parents and some family members. For more information, please see our Genetics Frequently Asked Questions. - Study the risks that lead to sudden unexplained death in childhood (SUDC). - 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. ;


Study Design


Related Conditions & MeSH terms


NCT number NCT03109197
Study type Observational [Patient Registry]
Source NYU Langone Health
Contact Laura Gould
Email laura.gould@nyulangone.org
Status Recruiting
Phase
Start date October 1, 2014
Completion date November 30, 2028