Sudden Unexplained Death in Childhood (SUDC) Registry

Conditions

• Sudden Unexplained Death Syndrome
• Sudden Unexplained Death in Childhood

Eligibility Criteria

Sex

ALL

Age

11 Months - 100 Years

Healthy Volunteers

Accepted

Interventions

• Biospecimin Collection — OTHER

Study Details

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.

Key Dates

Start date

Oct 1, 2014

Status verified

Oct 2025

Primary completion

Nov 30, 2028

Completion

Nov 30, 2028

Study Design

Enrollment

1,600 participants (estimated)

Arms

• Arm: Retrospective SUDC cases
  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
• Arm: Prospective SUDC cases
  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.

Primary Outcome Measure

Risks factors leading to sudden unexplained death in childhood (SUDC) collected from PHI [ Time Frame: 5 Years ]

Central Contacts

• Laura Gould
  [email protected]

Locations (1)

Find similar trials in New York, NY