Sudden Unexplained Death in Childhood (SUDC) Registry



Status:Recruiting
Conditions:Cardiology
Therapuetic Areas:Cardiology / Vascular Diseases
Healthy:No
Age Range:Any - 100
Updated:4/22/2018
Start Date:October 1, 2014
End Date:September 1, 2021
Contact:Anjanette Burns
Email:ajanette.burns@nyumc.org

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The SUDC Registry and Research Collaborative

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.

- 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.

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.
We found this trial at
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550 1st Ave
New York, New York 10016
(212) 263-7300
Principal Investigator: Orin Devinsky, MD
New York University School of Medicine NYU School of Medicine has a proud history that...
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