Team Vienna 4 SUDC Awareness Inc. (nonprofit, 501c3)
Sudden Unexplained Death in Childhood (SUDC) is a category of death in children/adolescents/teenagers, ages 1-18, that remains unexplained after a thorough investigation, including an autopsy, death scene investigation, and a medical record review of the child and family.
SUDC occurs mostly in apparently healthy kids during sleep.
SUDC is thought to be rare; occurring in about 1/100,000 children (per the CDC). However, the true numbers are unknown.
SUDC is the 5th leading category of death in children ages 1 to 4.
However, knowledge of SUDC in the medical community and general public is extremely scarce. Researchers do not know what causes SUDC or how to prevent it. Research is imperative, however no public funding of SUDC-targeted research currently exists.
*Since there are no causes, Team Vienna and The SUDC Coalition support enrollment in multiple studies if possible, to increase understanding of SUDC with the goal of identifying causes.
Please visit https://www.sudccoalition.com/programs-2 for more research opportunities.
Robert's Program on Sudden Unexpected Death in Pediatrics (SUDP)
P.I: Dr. Richard Goldstein
Harvard Medical School/Boston Children's Hospital
-an undiagnosed disease program of translational research (to improve health outcomes)
-the study includes unexplained deaths from live birth to 18 years old
-Involved Subspecialties: General Peds, Neuroscience, Neuropath, Neuro, Path, Cardiology, Genetics, Neuroimaging, Palliative Care, Bioinformatics, Metabolism
-includes a medical records review, pedigree, neuropath assessment, DNA whole exome sequencing, Collaborative Case Conf
-Results are reported back to the family and referring physician with recommended next steps
-To ENROLL: EMAIL TEAMVIENNA2018@YAHOO.COM with "Research Study" in the subject line.
Death certification inconsistencies and the lack of an ICD medical code (by the World Health Organization) for fully investigated deaths are 2 main reasons why the exact incidence is not known.
Every year, around 400 kids (ages 1-18) in the U.S. die without explanation; every year, around 400 families are devastated and try to get through the day. These numbers will grow as more cases are identified (via awareness, education, and research), as these numbers are likely greatly underestimated.
With increased awareness/education of SUDC, funding will follow, more research will be conducted, then causes can be uncovered, and prevention strategies can be put into place. Maybe then one day other parents won't go through the daily torture after the death of their healthy child for no known reason.