Sudden Unexplained Death in Childhood (SUDC) Registry

Launched by NYU LANGONE HEALTH · Apr 6, 2017

Keywords

ClinConnect Summary

The Sudden Unexplained Death in Childhood (SUDC) Registry is a study aimed at understanding why some children between 11 months and 18 years old die suddenly and unexpectedly, often without any clear explanation. Researchers are looking at the medical histories, circumstances, and other details surrounding these tragic cases to identify potential risk factors and causes. This knowledge could help develop ways to prevent such deaths in the future.

To participate in this study, children who have died suddenly and unexpectedly may be eligible, especially if there was no clear cause found after an autopsy. Family members of these children, such as parents and siblings, may also be invited to join, particularly if there's a history of heart or neurological conditions in the family. Participants can expect to share their experiences and any available medical information, which will contribute to the understanding of these cases. The study is currently recruiting participants and aims to make a meaningful impact on child health and safety.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Retrospective SUDC Cases
• • 11months to 18 years of age.
• • Subjects whose cause of death was sudden and unexplained-"Postinfancy SIDS," "Sudden Death of Childhood," "Undetermined," "Late SIDS," a vague description of symptoms of "undetermined etiology," or a diagnosis acknowledged to be speculative by the prosecting pathologist
• • If the retrospective case has banked DNA specimens.
• • Prospective SUDC Cases
• • SUDC cases, parents and eligible family members from 11months-100 years of age.
• • SUDC Subjects whose death was sudden and unexplained after the initial autopsy, and in whom a scene investigation and full autopsy was performed.
• • Family Members Subjects
• • If the SUDC case has DNA viable specimens, family members will be asked if they would also like to participate in the DNA portion. One or both biological parents if willing and able will be considered as a family subject.
• • Biological siblings and second degree relatives from age of 0-100 years of age that have had a history or currently have a heart condition and/or neurology condition.
• Exclusion Criteria:
• • SUDC Subjects
• • Subjects that are younger than 11months or older than 18 years of age will be excluded as a SUDC case.
• • Prospective SUDC cases of apparent suicide, homicide, and accident where the external cause was the obvious and only reason for the death will be excluded from this study.
• • Family Member Subjects Any siblings or second degree family relatives that did not have a history or current heart or neurology condition will not be able to enroll in the study.