The goals of the SDY Case Registry are to count the number of cases, understand the causes and risk factors, and inform prevention strategies for infants, children, and young adults who die suddenly and unexpectedly. The SDY Case Registry will publish the incidence figures calculated through this project. The states and jurisdictions participating in the SDY Case Registry gather data and consented DNA samples. Approved researchers study the data and DNA to learn more about sudden death in the young.
SDY Case Registry Publications
Burns K, Bienemann L, Camperlengo L, Cottengim C, Covington TM, Dykstra H, Faulkner M, Kobau R, Erck Lambert AB, MacLeod H, Parks SE, Rosenberg E, Russell MW, Shapiro-Mendoza CK, Shaw E, Tian N, Whittemore V, Kaltman JR, Sudden Death in the Young Case Registry Steering Committee. (2017). The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality. Pediatrics. 139(3), (limited access)
Q: What kind of research will be done through the SDY Case Registry?
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 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 with each other to explore the causes and risk factors for sudden cardiac death in the young. Investigators who have an interest in studying sudden cardiac death in the young are encouraged to contact Kristin M. Burns, MD, NHLBI Medical Officer: firstname.lastname@example.org
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 who have an interest in studying SUDEP using data and samples from the SDY Case Registry are encouraged to contact Vicky Whittemore, NINDS Program Director: email@example.com
Information about the Center for SUDEP Research is available at: http://csr.case.edu
Q: How can I participate in the Sudden Death in the Young Registry?
State public health departments or their bona fide agents have been funded to gather information for the 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, and pathologists and other subject matter experts interested in participating in child death review or advanced review teams should contact the SDY Case Registry to be connected with nearby participating jurisdictions.
Sudden Death in the Young Case Registry
c/o Michigan Public Health Institute
Scientists interested in accessing the SDY Case Registry data to explore the causes and characteristics of sudden death in the young should contact representatives at the NIH:
Q: What types of samples will be available to researchers?
DNA will be extracted from blood, and if this does not provide sufficient DNA, a small amount of fresh frozen liver or spleen 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 will be used by NIH-approved research to investigate SDY.
Q: Interested in studying SDY samples or data?
Researchers were funded by NIH in 2016 to use the Registry samples and data to study SDY. In the future, the samples and data will be made available to additional researchers. Please check this website for more information in the future.
Q: When did the CDC’s SUID Case Registry start? Can researchers access SUID data collected prior to the start of the SDY Case Registry?
The SUID Case Registry started in 2009. Researchers can access SUID data collected prior to the SDY Case Registry. Note: The SUID data is not linked to DNA samples. For more information: http://www.cdc.gov/sids/caseregistry.htm
Q: Is data being collected on cardiac arrest survivors in the SDY Case Registry?
Although scientifically important, the SDY Case Registry’s infrastructure is not set-up to study sudden cardiac arrest survivors. The infrastructure of the SDY Registry is based on the Child Death Review system. Survivor cases are not reviewed through Child Death Review.