Information for Families

SDY Logo

The Sudden Death In The Young (SDY) Case Registry:

Research, Diagnostic Testing & DNA Banking

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. The project is funded by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). The SDY 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.

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, and the DNA samples can be used for research or diagnostic testing, if the parents/legal guardians give consent.

When parents/legal guardians are offered the chance to have their child’s DNA be stored or used as part of the Registry, they are presented with 3 different parts, and Part One has 5 different items. Parents/legal guardians can consent to all 3 parts, or just 1 or 2. If they choose not to consent to any parts, there will be no loss of benefits or services to them.

Consent Part 1

Your signed consent for RESEARCH to allow us to:

  • Store your child’s DNA
  • Link information from your child’s death investigation with their DNA sample
  • Contact you with follow up questions if needed
  • Contact you if research finds information that may put your family members at risk for sudden death or other treatable diseases
  • Send your child’s DNA sample to the National Institutes of Health and store it for future research at the conclusion of funding for the SDY Case Registry

Consent Part 2

Your signed consent for potential DNA Diagnostic Testingthis is the potential opportunity for your child’s DNA to be tested for genes currently known to cause sudden death and to receive results from a commercial genetic testing laboratory.

Consent Part 3

Your signed consent for DNA Banking for family use – this is the opportunity to save your child’s DNA for the future potential testing.

How did you get my child's DNA?

At the time of your child’s autopsy, samples were taken that can be used for DNA extraction and stored in the SDY Case Registry.

Where will my child's DNA be stored?

Your child’s DNA will be stored at the SDY Biorepository 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 professionals working on your child’s death such as the medical examiners 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.

What is the purpose of the SDY Case Registry?

The purpose of the SDY Case Registry is to better understand the causes of these deaths and to find ways to prevent them.

Is the SDY Case Registry active where I live?

Your child must have been a resident of one of the participating states/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.

Select a state to see current participation in the SDY Case Registry

Contact details will show here.

Map of United States showing participation or non-participation in SDY Case Registry. Original map by file created by https://commons.wikimedia.org/wiki/Special:Contributions/Theshibboleth

Map Key

Color: #D3D3D3
Not Currently Participating
Color: #E59CA5
Selected Jurisdictions Participating
Color: #9F2937
Statewide Participation

Who will study my child's DNA?

Researchers 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 is a Biorepository?

A biorepository is a place that processes and stores samples for testing.

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, you would need to submit a letter to the Data Coordinating Center. After the letter is received, no further research on the DNA sample will happen. 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 completed research.

Other questions or concerns?

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

Email: Please use our contact form.

Phone: 1-800-656-2434