NCT03109197|RecruitingDMC
Sudden Unexplained Death in Childhood (SUDC) Registry
SUDC
The SUDC Registry and Research Collaborative
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SUDC
The SUDC Registry and Research Collaborative
Sponsor study identifier
observational
1,600
1 country
1
Study Start
October 1, 2014
Actual (reported)Primary Completion
November 30, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
November 30, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
November 30, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
October 1, 2014
Actual (reported)April 6, 2017
Actual (reported)April 12, 2017
Actual (reported)November 30, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
November 30, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Risks factors leading to sudden unexplained death in childhood (SUDC) collected from PHI
5 Years
All child biospecimens (including mucosal swab or blood samples for DNA analysis, pathology slides, tissue blocks, tissue samples or organs retained at autopsy) will be transferred to NYU Biorepository
Heart and brain tissue will undergo full cardiac pathology consultation or neuropathology consultation will be transferred to pathologists at NYU or Mayo (based on pathologist availability). The PHI will remain intact in these cases since they will need to know how to identify the deceased with the medical records they receive and to complete the entire investigation thoroughly. A full consultation report will be sent back to Dr. Orrin Devinsky and tissue will be returned to the NYU biorepository upon completion of the cardiac or neuropathology consultation.
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
1300 participants (400 SUDC subjects and 800 parents, and approximately 100 siblings or symptomatic second degree relatives) over a period of 5 years, including both retrospectively and prospectively ascertained cases.
New York University School of Medicine
New York, New York, 10016, United States
For retrospective SUDC cases: Mucosal swab or blood samples for DNA analysis, pathology slides, tissue blocks, tissue samples or organs retained at autopsy. For prospective SUDC cases: Mucosal swab or blood samples for DNA analysis, pathology slides, tissue blocks, tissue samples except heart and brain tissue that will undergo full cardiac pathology consultation or neuropathology consultation will be transferred to pathologists at NYU or Mayo (based on pathologist availability).
Orrin Devinsky, MD
NYU Langone Health
First Submitted
April 6, 2017
First Posted
April 12, 2017
Study Start
October 1, 2014
Actual (reported)Primary Completion
November 30, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Brugada Ablation of VF Substrate Ongoing MultiCenter Registry
Contact the study team to confirm eligibility.
Study Completion
November 30, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
August 28, 2026
Record last verified: 2026-08
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Source: ClinicalTrials.gov.
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