Sudden Death in the Young Case Registry

The SUID (Sudden Unexpected Infant Death)/SDY (Sudden Death in the Young) Case Registry gathers information to learn more about children (up to age 20) who die suddenly and unexpectedly to understand the causes of these deaths better and 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 SUID and SDY Case Registry Data Coordinating Center is located in Michigan at the Michigan Public Health Institute (MPHI). It is working to put the SUID and SDY Case Registry into action across the United States.

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

The SUID and SDY Case Registry gathers 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 consent, the DNA samples can be used for research or DNA banking and stored at the SDY Biorepository.

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

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

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

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

Only people working with the SUID and 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.

You are free to withdraw your child’s DNA sample from the SDY Case Registry at any time. To withdraw, please get in touch with 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 SUID and SDY Case Registry.

Your child’s DNA is being stored at the SUID and SDY Case Registry Biorepository at the University of Michigan. This DNA will most likely be sequenced and linked to de-identified data from their death investigation so that it can be studied by researchers trying to identify causes of sudden death in babies, children, and adolescents. Sequence data is a large data file with a person’s individual genetic code spelled out. A DNA sample contains a person’s genetic code but it is not yet spelled out or readable.

This information will be stored in a database at the National Institutes of Health (NIH).

The purpose of sharing genetic data is to better understand results from research. If you consented to allow research testing to be done on your child’s DNA sample, results may be included in the NIH data bank and other publicly available databases.

The NIH has a Genomic Data Sharing Policy that outlines how the data can be shared. Genomic data refers to information and results from DNA testing. This will help researchers learn through future studies how to improve health and develop treatments for disease.

Future research may include creating cell lines that will keep reproducing and can be used for many purposes. Your child’s sample may enable researchers to develop medical tests or treatments that have commercial value. You will not receive any financial benefit from these activities.

Data entered into any genetic sharing databases will be de-identified and the link between the DNA, data, and your name and contact information will be broken before the data is entered into any database. This means that your child’s name or any other information that could be used to identify them will not be stored in the data bank.

Researchers using the data from the NIH data bank or other genetic data sharing databases will not be able to contact you. Even though the data will have the identifying information removed, it may still be possible in the future to identify your child from their DNA sample because some genetic changes are unique only to one person or one family. Because of this, it may still be possible to link a genetic finding back to a family. It may also be possible to identify traits, like racial or ethnic group from DNA, which could be used to discriminate against or stigmatize certain groups. There may also be additional risks that are not known at this time.

The NIH will take care to minimize these risks by limiting who has access to the DNA data and by keeping it secure.
Information about the policy can be found online here: https://sharing.nih.gov/faqs#/genomic-data-sharing-policy.htm

Yes. Consenting to allow our child’s DNA to be a part of the Case Registry does not guarantee the information or DNA will be studied.

If results are identified that are helpful to understanding your child’s cause of death you will be notified by either the medical examiner who worked on your child’s case or a genetic counselor from the SUID and SDY Case Registry. You will be contacted by phone and/or email (if email address is available). The medical examiner or genetic counselor will explain to you what these results mean and if any medical follow-up is recommended for you or your family. You will also receive a copy of the results from the testing on your child’s DNA.

Participation is voluntary. There is no penalty or loss of benefits to your family if you choose to no longer participate. You can withdraw consent at any time. To withdraw consent, you can call or write to the SUID and SDY Case Registry at the address and phone number below asking to:

• Remove your contact information so you will not be contacted
• Destroy your child’s DNA sample at the Biorepository
• Have your child’s DNA sequence information and linked data removed from the NIH database

Once we hear from you, no further researchers will have access to your child’s DNA sample, sequenced DNA information, or other information linked to the DNA. But any information about the DNA sample that researchers have already learned by that point will not be destroyed.

If the DNA sample has already been sent for research, you will not be able to ask that the sample or information learned from studying the sample be destroyed.

Who do you contact if you have questions?

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: info@SDYregistry.org
Fax: 844-816-9662

Should you have additional questions, please get in touch with the SUID and SDY Case Registry Data Coordinating Center at the Michigan Public Health Institute:

Email: Please use our contact form.

Phone: 1-800-656-2434