Accessible Search Form           Advanced Search

News & Resources

E-mail updates icon Email Alerts

Submit your email address below to receive email alerts about fact sheets, stories of success, and other NHLBI research-related articles. Learn more.

Frequently Asked Questions about the Sudden Death in the Young Registry

  • PRINT  |  SHARE

Image of an ambulance

Q: What is the Sudden Death in the Young (SDY) Registry?

A: The SDY Registry is a resource designed to increase understanding of the causes and risk factors for sudden death in the young. It is funded by the National Heart, Lung, and Blood Institute (NHLBI), the National Institute of Neurological Disorders and Stroke (NINDS), and the Centers for Disease Control and Prevention (CDC).

Child death review teams in multiple states will collect comprehensive data on new cases of infants, children, and young adults who died suddenly and unexpectedly and submit that data to the registry. Autopsy protocols will be standardized, and a DNA sample will be collected in a subset of cases. Cases of interest will undergo additional local review by experts in sudden cardiac death and sudden unexpected death in epilepsy (SUDEP). The SDY Registry is an expansion of the CDC's Sudden Unexpected Infant Death Case Registry, which currently tracks sudden unexpected deaths in children up to age 1 in nine states.

In the future, scientists will be able to access the data for research and investigation into the causes of sudden death in the young.

Q: How can I participate in the Sudden Death in the Young Registry?

For scientists with an interest in studying sudden death in the young:

A: The SDY Registry data will be collected by state public health departments or their bona fide agents.

Interested state health departments should first form teams consisting of child death review experts, medical examiners/coroners, cardiologists, neurologists, and other subject matter experts and then apply to the CDC’s Funding Opportunity Announcement (FOA) to collect data for the SDY Registry. The FOA will be released in the spring of 2014. If you are interested in participating in data collection for the SDY Registry, contact the state public health department and the child death review team in your area to discuss your possible participation on a team.

In the future, scientists will be able to access the SDY Registry data to explore the causes and risk factors for sudden death in the young.

For individuals who have lost a loved one to sudden death:

A: We hope you will support our efforts by raising awareness about the SDY Registry. Beginning in the fall of 2014, the registry will be collecting data on new cases of sudden death in the young through the Child Death Review System in multiple states. Unfortunately, we can only receive data through participating state public health agencies. We cannot receive data from parents or other caregivers or data related to cases that occurred before the fall of 2014.

Q: When will the CDC release the Funding Opportunity Announcement (FOA)? 

A: The FOA will be released in the spring of 2014. It will be found online at www.grants.gov.

Q: What background information may be helpful as I craft my application for the FOA? 

A: The Sudden Death in the Young Registry is an expansion of the Sudden Unexpected Infant Death Case Registry (SUID-CR), which is built on the National Center for Child Death Review system. Information about the SUID-CR and the Child Death Review System can be found at the following links:

Additional Resources