Sudden Death in the Young Case Registry

Research

Goals

The goals 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 Case Registry will continue to publish incidence calculated through this project. The states and jurisdictions participating gather data and consented DNA samples. Approved researchers study the data and DNA to learn more about sudden death in the young.

Publications

Characteristics of Sudden Unexpected Infant Deaths on Shared and Nonshared Sleep Surfaces

Erck Lambert AB, Shapiro-Mendoza CK, Parks SE, Cottengim C, Faulkner M, Hauck FR. Characteristics of Sudden Unexpected Infant Deaths on Shared and Nonshared Sleep Surfaces. Pediatrics. 2024 Mar 1;153(3):e2023061984. doi: 10.1542/peds.2023-061984. PMID: 38374785.

Risk Factors for Suffocation and Unexplained Causes of Infant Deaths

Parks SE, DeSisto CL, Kortsmit K, Bombard JM, Shapiro-Mendoza CK. Risk Factors for Suffocation and Unexplained Causes of Infant Deaths. Pediatrics. 2023 Jan 1;151(1):e2022057771. doi: 10.1542/peds.2022-057771. PMID: 36464994; PMCID: PMC9942004.

Family Screening After Sudden Death in a Population-Based Study of Children

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.

Explaining Sudden Unexpected Infant Deaths, 2011-2017

Parks SE, Erck Lambert AB, Hauck FR, Cottengim CR, Faulkner M, Shapiro-Mendoza CK. Explaining Sudden Unexpected Infant Deaths, 2011-2017. Pediatrics. 2021 May;147(5):e2020035873. doi: 10.1542/peds.2020-035873. PMID: 33906930; PMCID: PMC8132195.

U-Shaped Pillows and Sleep-Related Infant Deaths, United States, 2004-2015

Cottengim C, Parks SE, Erck Lambert AB, Dykstra HK, Shaw E, Johnston E, Olson CK, Shapiro-Mendoza CK. U-Shaped Pillows and Sleep-Related Infant Deaths, United States, 2004-2015. Matern Child Health J. 2020 Feb;24(2):222-228. doi: 10.1007/s10995-019-02847-9. PMID: 31828577.

Epidemiology of Sudden Death in a Population-Based Study of Infants and Children

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

Sleep-Related Infant Suffocation Deaths Attributable to Soft Bedding, Overlay, and Wedging

Erck Lambert AB, Parks SE, Cottengim C, Faulkner M, Hauck FR, Shapiro-Mendoza CK. Sleep-Related Infant Suffocation Deaths Attributable to Soft Bedding, Overlay, and Wedging. Pediatrics. 2019 May;143(5):e20183408. doi: 10.1542/peds.2018-3408. PMID: 31010907; PMCID: PMC6637427.

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

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.

The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality

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).

Death Scene Investigation and Autopsy Practices in Sudden Unexpected Infant Deaths

Erck Lambert AB, Parks SE, Camperlengo L, Cottengim C, Anderson RL, Covington TM, Shapiro-Mendoza CK. Death Scene Investigation and Autopsy Practices in Sudden Unexpected Infant Deaths. J Pediatr. 2016 Jul;174:84-90.e1. doi: 10.1016/j.jpeds.2016.03.057. Epub 2016 Apr 22. PMID: 27113380; PMCID: PMC5063238.

The Sudden Unexpected Infant Death Case Registry: A Method to Improve Surveillance

Shapiro-Mendoza CK, Camperlengo LT, Kim SY, Covington T. The sudden unexpected infant death case registry: a method to improve surveillance. Pediatrics. 2012 Feb;129(2):e486-93. doi: 10.1542/peds.2011-0854. Epub 2012 Jan 9. PMID: 22232303.

What kind of research will be done through the SUID and SDY Case Registry?

Teams have started to do genomic research using data and DNA samples from the SUID and SDY Case Registry.

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 Case Registry are encouraged to contact Vicky Whittemore, NINDS Program Director: vicky.whittemore@ninds.gov.

How can I participate?

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 SUID and SDY Case Registry to connect with nearby participating jurisdictions.

SUID and SDY Case Registry Data Coordinating Center
c/o Michigan Public Health Institute
2436 Woodlake Circle, Suite 300
Okemos, MI 48864
Telephone: 800-656-2434
Email: Please use our contact form.
Fax: 844-816-9662

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

How can I access data in the Case Registry?

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/

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 tissue will be used for DNA extraction. DNA samples will be stored at the University of Michigan SUID and 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 SUID and SDY.

When did the CDC’s Sudden Unexpected Infant Death (SUID) Case Registry start?

The CDC SUID Case Registry work began in 2009.

Can researchers access SUID data collected before the start of the SDY Case Registry?

Researchers can access SUID data on deaths beginning in year 2010. Note: The SUID data is not linked to DNA samples. For more information: http://www.cdc.gov/sids/caseregistry.htm

Is data from the SUID and SDY Case Registry genomes available to researchers?

SUID and SDY Case Registry genomic data from cases consented for research are available to the scientific community through the NIH database of Genotypes and Phenotypes (dbGaP). 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.

Is data being collected on cardiac arrest survivors in the SUID and SDY Case Registry?

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