Sudden Death in the Young Case Registry

The SUID and SDY Case Registry (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 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. Use the interactive map below to see if your state is participating.

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 SUID and SDY Case Registry Biorepository.

DNA banking is when you save a DNA 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, Case Registry staff, and approved researchers, will access the information. All individuals sign a confidentiality form stating they will not share that information with any other person or organization.

There is no cost to you to be involved. Your family will not receive any payments for participating.

People working with the 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.

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 your child’s de-identified data from their death investigation so that it can be studied by researchers. These researchers are trying to identify causes of sudden death in infants and children.

Researchers will use the information and DNA for studies to learn more about health and different diseases. There could be many studies done in the future for many different purposes. You will not be asked to consent to specific studies. Some researchers may look at all your child’s genes. This is called genome sequencing. This information is unique to your child like a fingerprint. It is also unique to your family because children inherit half of their genes from each parent. Genetic testing may reveal information specific to your family which could be important to other family members. Because this registry has no planned end date, the DNA may be studied using new methods developed in the future. This information, including data from genome sequencing 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 consent to allow research testing to be done on your child’s DNA sample, results may be included in the NIH database and other public databases. Your child’s de-identified autopsy report and other information about your child collected during their death investigation may also be stored at NIH database.

Yes. Data entered into genetic sharing databases will be de-identified. 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 that stores genetic information.

However, 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 to one person or one family. Because of this, it may 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 be other 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 testing finds a change in your child’s DNA that causes health problems, you and other family members may learn about a health problem that was present in your child. This could be important for the health of your family. If results are found 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 Case Registry. You will be contacted by phone or email, at the contact information you provided on the consent form. 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 get a copy of the results from the testing on your child’s DNA. Because the researcher will not have identified information on your child, they will work with the Case Registry staff, who keep the linking information between your child’s de-identified data and identified data, to get in touch with you. However, there is no guarantee the SUID and SDY Case Registry will find a cause of death or any genetic changes in your child. While there is likely no direct benefit to you and your family, your participation will help researchers make discoveries that might help people in the future.

There is no planned end date at this time.

Participation is voluntary. If you do not want to participate, or change your mind about participating, there will be no penalty. You will not loss any benefits you would have otherwise been entitled to. You can withdraw your consent at any time. To do this, you can call or email the Case Registry with the contact information below asking to:

• Remove your contact information
• Destroy your child’s DNA sample
• Remove your child’s autopsy report

Once we hear from you, no more researchers will be sent your child’s DNA sample or autopsy report. If the DNA sample and/or autopsy report has already been sent to researchers, the researchers will not destroy it. If the DNA has been sequenced and sent to the NIH database, the genetic information cannot be destroyed and will stay in the NIH database. If the de-identified autopsy report has already been sent to the NIH database, it cannot be destroyed, and it will stay in the NIH database.

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: Please use our contact form.
Fax: 844-816-9662