With the support of our partners, Microsoft Genomics, TATA consultancy services, and research collaborators worldwide, we are proud to be building the first-ever cloud-based whole-genome database specifically dedicated to sudden infant/child death. This data set will be securely stored with up-to-date privacy protections. We aim to open access to the database to qualified researchers around the globe to maximize the results that can be generated from this rich data source. If you wish to participate, please see the details about the research study below led by Seattle Children’s Research Institute.
Sudden Unexpected Infant/Child Death Research Study
A genetic database for infants and children who have passed away suddenly and unexpectedly
Researchers at Seattle Children’s Research Institute are creating a genetic database to search for key genes or mutations that could explain why some infants/children pass away from SIDS (sudden infant death syndrome), SUID (sudden unexpected infant death), or SUDC (sudden unexplained death in childhood). The research team is led by Dr. Nino Ramirez, Director of the Center for Integrated Brain Research, and Dr. Ghayda Mirzaa, Assistant Professor of Genetic Medicine. If you joined this study, we would request tissue and/or blood samples and medical records from the deceased child on your behalf as well as saliva cheek swabs from biological family members, such as the child’s mother and father. We would then perform genetic testing on these samples and store coded genetic and medical information in a secure database.
If you are a parent or legal guardian of an infant or child who died suddenly with no apparent medical reason and would like to learn more about this study, please call 206-884-4102 or email firstname.lastname@example.org. We are deeply sorry for your loss.