Team Vienna 4 SUDC Awareness Inc. (nonprofit, 501(c)(3)
Resources
GRIEF SUPPORT:
https://www.compassionatefriends.org/
In Pennsylvania:
https://www.hospiceandcommunitycare.org/grief-and-loss/
https://sdyregistry.org/resources-for-families/pennsylvania/
In New Jersey:
https://www.stephysplace.org/sp/
https://www.commongroundgriefcenter.org/
https://www.hackensackmeridianhealth.org/en/about-us/support-groups
RESEARCH OPPORTUNITIES:
There are few studies on unexplained pediatric deaths.
Robert's Program on Sudden Unexpected Death in Pediatrics (SUDP)
P.I: Dr. Richard Goldstein (Dr. Hannah Kinney, retired)
Boston Children's Hospital/Harvard Medical School
-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 find out more: Please email RobertsProgram@Childrens.Harvard.edu
Other studies:
Sudden Death in the Young (SDY) Registry
SUDCRRC
