Data Projects – Sudden Death in the Young Case Registry

Data Projects
The Sudden Death in the Young Case Registry

The sudden death of a child is tragic and has far-reaching effects on families and communities. The National Institutes of Health (NIH) and the Center for Disease Control and Prevention (CDC) have launched the Sudden Death in the Young (SDY) Case Registry to help better explain this syndrome.

In Minnesota, the Department of Health is working with the Data Coordinating Center, based at the Michigan Public Health Institute (MPHI), to gather and store information about sudden child deaths to help:

  • Count the number and types of sudden deaths in babies, children and young adults up to age 20
  • Try to understand the causes for these deaths
  • See if some children are more at risk than others
  • Find ways to prevent these deaths

Gathering information

The Sudden Death in the Young (SDY) Case Registry gathers information to learn more about children who die suddenly and expectedly. Collecting this information can lead us to understand how common this syndrome is, and what are the potential causes and risk factors for infants, children and young adults who die suddenly and unexpectedly.

The SDY Case Registry team confidentially gathers information from the autopsy, death scene investigation, DNA from samples obtained at the time of autopsy, and medical history of the child and the child’s family.

A Child Review Team, supported by experts in Sudden Cardiac Death (SCD), Sudden Unexpected Death in Epilepsy (SUDEP) and pathology, is in charge of reviewing the collected information. This team of health care experts can include medical doctors, medical examiners, child protective services and public health practitioners.

Information types

The SDY Case Registry team collects and stores four types of information:  death investigation records, family contacts, a DNA sample from tissue collected during the autopsy, and any genetic test findings completed for the registry.

  • Death investigation records – Medical examiners, coroners or pathologists typically investigate sudden death in children. These professionals pull together information from health records, family interviews, the autopsy, first responders or police, and other involved agencies like social services.
  • Family contact – To allow death investigators or the SDY Case Registry team to ask follow up questions or request more information, we would like a family contact’s home address, phone number and email address. We will also inform the family if we learn information that may put any family member at risk for sudden death or about a treatable health condition. We do need the family contact’s consent to confidentially store this information in the SDY Case Registry.
  • DNA sample – Collecting a child’s DNA sample and storing it for the future allows the SDY Case Registry team to conduct diagnostic genetic tests that can find changes in the genes that may explain disease or sudden death. We do need the family contact’s consent to confidentially store this information in the SDY Case Registry.
  • Genetic testing – Investigators or SDY Case Registry researchers may need to additional DNA diagnostic testing to help determine the cause of death or to identify more information from the DNA. We do need the family contact’s consent to send a portion of a child’s DNA sample to a diagnostic testing and/ or research lab.

Information for families

This resource offers answers to common questions families may have about the SDY registry.

Get involved

To learn more about the SDY Registry and becoming a part of Minnesota’s data collection network, please contact Gloria Mutombo at gloria.mutombo@state.mn.us.

Additional resources

Learn more about and find Minnesota resources for Sudden Death in the Young and Sudden Unexpected Infant Death.

The Safe to Sleep® public education campaign offers a number of materials to help share safe infant sleep material. These are available in English and Spanish. MDH Sudden Unexpected Infant Deaths (Includes SIDS and Sleep-Related Infant Deaths) and Safe Sleep