Team Vienna 4 SUDC Awareness Inc. (nonprofit, 501c3)
A great list of online support is available here on The SUDC Coalition website: https://www.sudccoalition.com/programs-1
There are few studies on unexplained pediatric deaths.
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 Conferences
-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.
*Please see https://www.sudccoalition.com/programs-2 for more research opportunities.