Sudden Death in the Young Case Registry

Kannankeril PJ, Shoemaker MB, Fountain D, Roden DM, Yandell M, Tristani-Firouzi M, Etheridge SP, Webster G, George AL, McNally EM, MacLeod H, Burns KM. Family Screening After Sudden Death in a Population-Based Study of Children. Pediatrics. 2022 Apr 1;149(4):e2021054432. doi: 10.1542/peds.2021-054432. PMID: 35284934; PMCID: PMC9153292.

Kristin M.Burns MD, Carri Cottengim MA, Heather Dykstra MPA, Meghan Faulkner MA, Alexa B. Erck Lambert MPH, Heather MacLeod MS, CGC, Alissa Novak BS, Sharyn E. Parks PhD, MPH, Mark W. Russell MD, Carrie K. Shapiro-Mendoza PhD, MPH, Esther Shaw MSIS, Niu Tian MD, PhD, Vicky Whittemore PhD, Jonathan R. Kaltman MD. (2020). Epidemiology of Sudden Death in a Population-Based Study of Infants and Children. Journal of Pediatrics: X, 100023

Gulino, S.P., Burns, K., Gunther, W.M., & MacLeod, H. (2018). Improving Forensic Pathologic Investigation of Sudden Death in the Young: Tools, Guidance, and Methods of Cardiovascular Dissection from the Sudden Death in the Young Case Registry. Academic Forensic Pathology, 8(2), 347–391.

Burns, K.M., Bienemann, L., Camperlengo, L., Cottengim, C., Covington, T.M., Dykstra, H., Faulkner, M., Kobau, R., Erck Lambert, A.B., MacLeod, H., Parks, S.E., Rosenberg, E., Russell, M.W., Shapiro-Mendoza, C.K., Shaw, E., Tian, N., Whittemore, V., Kaltman, J.R. (2017). The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality. Pediatrics, 139(3).

In April 2016, the National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH) funded the following teams to begin research using data and DNA samples from the SUID and SDY Case Registry.

• Principal Investigators: Alfred George, Jr., MD and Elizabeth McNally, MD, PhD (Northwestern University at Chicago)
• Principal Investigator: Prince Kannankeril, MD, MSCI (Vanderbilt University)
• Principal Investigators: Martin Tristani-Firouzi, MD and Mark Yandell, PhD (University of Utah).

The teams will work collaboratively to explore the causes and risk factors for sudden cardiac death in the young. Investigators interested in studying sudden cardiac death in the young are encouraged to contact Kristin M. Burns, MD, NHLBI Medical Officer: kristin.burns@nih.gov.

Teams of researchers have also been funded by the National Institute of Neurological Disease and Stroke (NINDS) at the NIH to study sudden unexpected death in epilepsy (SUDEP) through the Center for SUDEP Research (CSR). Investigators interested in studying SUDEP using data and samples from the SUID and SDY Case Registry are encouraged to contact Vicky Whittemore, NINDS Program Director: vicky.whittemore@ninds.gov.

State public health departments or their bona fide agents have been funded to gather information for the SUID and SDY Case Registry. They work with their existing state/local Child Death Review programs to conduct reviews on their cases of sudden and unexplained deaths in children and youth and engage with medical specialists (including medical examiners/coroners, cardiologists, and neurologists) to conduct advanced reviews.

Cardiologists, neurologists, pathologists, and other subject matter experts interested in participating in child death review or advanced review teams should contact the SDY Case Registry to connect with nearby participating jurisdictions.

Sudden Death in the Young Case Registry

c/o Michigan Public Health Institute
Telephone: 800-656-2434
Email: Please use our contact form.

Scientists interested in accessing the SUID and SDY Case Registry data to explore the causes and characteristics of sudden death in the young should contact representatives at the NIH:

• Kristin M. Burns, MD: NHLBI Medical Officer: kristin.burns@nih.gov
• Vicky Whittemore, NINDS Program Director: vicky.whittemore@ninds.gov

Researchers request data from the National Fatality Review Case Reporting System. Please visit the National Center for Fatality Review and Prevention website to learn more about the data dissemination process or how to make a data request.

National Center for Fatality Review and Prevention

https://www.ncfrp.org/data/data-dissemination/

DNA will be extracted from blood, and if this does not provide sufficient DNA, a small amount of fresh frozen tissue will be used for DNA extraction. DNA samples will be stored at the University of Michigan SDY Biorepository. In cases where consent is obtained, DNA samples will be available for research. The data and samples will be used to create a resource that NIH-funded researchers will use to investigate SDY.

The Sudden Unexpected Infant Death (SUID) Case Registry started in 2009. Researchers can access SUID data collected before the SUID and SDY Case Registry. Note: The SUID data is not linked to DNA samples. For more information: http://www.cdc.gov/sids/caseregistry.htm

SDY Case Registry genomic data from cases consented for research will be made available to the scientific community through the NIH database of Genotypes and Phenotypes (dbGaP) starting approximately in the summer of 2022. Interested investigators can apply through NIH for access to de-identified datasets for research.  Requests are vetted by NIH staff via NIH Data Access Committees to confirm that the proposed research use is consistent with the data use limitations of the dataset as directed in the informed consent materials.

Although scientifically important, the SUID and SDY Case Registry infrastructure is not set up to study sudden cardiac arrest survivors. The infrastructure of the SUID and SDY Case Registry is based on the Child Death Review System. Survivor cases are not reviewed through Child Death Review.