SUID Tissue Consortium
Research into the medical bases of sleep-related infant deaths has almost come to a halt in the US. It’s a result of there being no infrastructure that allows tissue to be obtained from deceased infants to be used for this critical research. It’s not that parents are refusing to donate their infant’s tissue. They are simply not being asked.
To address this situation, the executive director of the American SIDS Institute (Dr. Betty McEntire) along with the Miami-Dade Chief Medical Examiner (Dr. Bruce Hyma) started the SUID Tissue Consortium. SUID (sudden unexpected infant death) includes deaths where causes are found (such as accidental suffocation) as well as those that remain undetermined (such as SIDS). This consortium involves a partnership with several medical examiners and the NICHD (National Institute of Child Health and Human Development) Brain and Tissue Bank in Maryland (funded by NIH – National Institutes of Health). The hope is to reach every parent of an infant who dies suddenly and unexpectedly and offer the opportunity to donate tissue for research. In addition to sleep-related deaths, we need tissue from other infants to be used as controls, such as victims of drownings and car accidents. Donor services professionals who are experienced at explaining the donation process to parents in an informative but sensitive way contact the family soon after the death. If consent is given, the tissue is prepared at autopsy and shipped to the tissue bank. This tissue along with medical information and data about the death will be available for researchers all over the country, now and in the future. This will allow crucial research to be done to further understanding about what subtle medical abnormalities may put an infant at increased risk for sudden infant death.
The American SIDS Institute along with the NICHD Brain and Tissue Bank trains the participants, including medical examiners, investigators, technicians and donor services professionals. We also provide all equipment and materials needed to collect, prepare and ship the tissue to the Tissue Bank. For example, the Institute provides freezers and centrifuges for medical examiner offices that need them, and NICHD Tissue Bank provides freezer shipping containers and pays for shipping. All lab supplies are provided. Medical examiners do not have to assume any additional costs in order to participate in the consortium.
In 2013, we expanded the consortium to include children through 3 years of age. Sudden deaths, while rare past age 1, do occur and are called sudden unexpected death in childhood (SUDC). In 2014 we will increase our effort to expand to medical examiner offices around the country. Current participants include offices in Miami, West Palm Beach, Naples, Lakeland, Tampa and Minneapolis.
If your medical examiner office would like to explore entering the consortium, please email Dr. McEntire.
Dr. Hyma made a presentation on the SUID Tissue Consortium at the 2013 National Medical Examiners Meeting in Milwaukee. See SUID Tissue Consortium Abstract – NAME 2013.
The tissue consortium was presented at a SIDS Institute sponsored pathology symposium at the International Conference on Stillbirth, SIDS, and infant survival on October 5, 2012, in Baltimore, MD. For a paper summarizing the presentations of the symposium see Krous Symposium Publication.