RECRUITING

Sudden Unexplained Death in Childhood (SUDC) Registry

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Sudden Unexplained Death SyndromeSudden Unexplained Death in Childhood

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

The SUDC Registry and Research Collaborative

Quick Facts

Study Start:2014-10-01
Study Completion:2028-11-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03109197

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:11 Months to 100 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * 11months to 18 years of age.
  2. * 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
  3. * If the retrospective case has banked DNA specimens.
  4. * SUDC cases, parents and eligible family members from 11months-100 years of age.
  5. * SUDC Subjects whose death was sudden and unexplained after the initial autopsy, and in whom a scene investigation and full autopsy was performed.
  6. * 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.
  7. * 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.
  1. * Subjects that are younger than 11months or older than 18 years of age will be excluded as a SUDC case.
  2. * 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.

Contacts and Locations

Study Contact

Laura Gould
CONTACT
laura.gould@nyulangone.org

Principal Investigator

Orrin Devinsky, MD
PRINCIPAL_INVESTIGATOR
NYU Langone Health

Study Locations (Sites)

New York University School of Medicine
New York, New York, 10016
United States

Collaborators and Investigators

Sponsor: NYU Langone Health

  • Orrin Devinsky, MD, PRINCIPAL_INVESTIGATOR, NYU Langone Health

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2014-10-01
Study Completion Date2028-11-30

Study Record Updates

Study Start Date2014-10-01
Study Completion Date2028-11-30

Terms related to this study

Additional Relevant MeSH Terms

  • Sudden Unexplained Death Syndrome
  • Sudden Unexplained Death in Childhood