Information for Families

Information for Families

What is the SDY Case Registry?

The Sudden Death in the Young Case Registry (SDY) gathers information to learn more about children (up to age 20) who die suddenly and unexpectedly to better understand the causes of these deaths and to find ways to prevent them. The project is funded by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). The SDY Case Registry Data Coordinating Center is located in Michigan, at the Michigan Public Health Institute (MPHI), and is working to put the SDY Case Registry into action across the United States.

Is the SDY Case Registry active where I live?

Your child must have been a resident of one of the participating states or jurisdictions to be eligible for the SDY Case Registry. For now, only some states are participating in the SDY Case Registry. Use the interactive map below to see if your state is participating.

What kind of information is the SDY Case Registry gathering?

The SDY Case Registry is gathering information from the autopsy and death scene investigation. This includes information about the sudden death, medical history of the child, and the child’s family history. Samples are taken at the time of autopsy for DNA extraction. If you give consent, the DNA samples can be used for research or DNA banking and will be stored at the SDY Biorepository.

What is DNA Banking?

DNA banking is when you save a sample for your family’s use to have genetic testing done now or in the future.

What is a Biorepository?

A biorepository is a place that stores and processes samples for future testing and/or research . The SDY Case Registry Biorepository is located at the University of Michigan Hospital.

Will my child’s information be kept private?

Yes, all collected information will be confidential and private. Only people working on your child’s death such as the medical examiners, SDY Case Registry staff, and approved researchers will have access to the information. All individuals involved sign a confidentially form stating they will not share that information with any other person or organization.

How much will it cost my family to join the SDY Case Registry?

There is no cost to you to be involved in the SDY Case Registry. Your family will not receive any payments for participating.

Who will study my child’s DNA?

Only people working with the SDY Case Registry and approved researchers who are trying to understand why children die suddenly and unexpectedly are interested in studying your child’s DNA so that they can work to prevent other children from dying suddenly and unexpectedly.

What if I consent to have my child’s DNA in the Registry, but later change my mind?

You are free to withdraw your child’s DNA sample from the Registry at any time. To withdraw please contact the Data Coordinating Center. After you ask to withdraw your consent, no further research will be done on the DNA sample. Any information about your child’s DNA that researchers have already learned will not be destroyed. The information generated from the DNA would remain part of the Registry.

Other questions or concerns?

Should you have additional questions please contact the SDY Case Registry Data Coordinating Center at the Michigan Public Health Institute:

Email: Please use our contact form.

Phone: 1-800-656-2434