Frequently Asked Questions

General Questions

What is SUDC?

Sudden Unexplained Death in Childhood (SUDC) refers to the sudden and unexplained death of a child aged 12 months or older that remains unexplained after a thorough case investigation, including a performance of a complete autopsy, examination of the death scene, and clinical history review.

What is the SUDC Foundation?

The SUDC Foundation is the only organization worldwide whose purpose is to raise awareness, fund research, and serve those affected SUDC. The SUDC Foundation provides all services at no cost to families.

Is SUDC something new?

SUDC is believed to be rare; occurring in about one in every 100,000 children. According to 2023 data from the Centers for Disease and Control (CDC) every year in the United States, approximately 500 children are lost to SUDC, (R96-R99). It is most common in young children and is the fifth leading category of death among children between the ages of 1 and 4. We do not know exactly how often SUDC occurs-in the U.S. or around the world because the World Health Organization (WHO) lacks a specific way to record sudden and unexplained deaths in children that have been thoroughly investigated, it is impossible to know how widespread the problem is.

Why haven't I heard of SUDC before?

SUDC was first defined in 2005. Although it was not new, this was the first public recognition of unexplained childhood deaths since the redefinition of SIDS in 1989, which excluded children older than 12 months. SUDC has received little attention from public health officials. Current awareness efforts are driven by the SUDC Foundation. Unfortunately, most people first learn of SUDC after a tragedy in their own child, their patient or someone they know. Raising awareness of SUDC is at the core of the work of the SUDC Foundation.

What causes SUDC?

At this time, we do not know what causes SUDC. Sudden Unexplained Death in Childhood (SUDC) is a category of death, not a cause of death, of a child aged 12 months or older that remains unexplained after a thorough investigation, including an autopsy. It is likely that SUDC does not have a single cause, but many causes, and is an umbrella term to describe these deaths that have not been specifically determined.

Can SUDC be predicted or prevented?

No. At this time, we do not know what causes SUDC, how to predict it or how to prevent it. Through research, we strive to discover the risk factors and underlying causes of SUDC that will lead to its prevention. In the meantime, the SUDC Foundation recommends all families follow guidelines provided by the American Academy of Pediatrics in regards to attending regular child wellness visits, maintaining current vaccinations and seeking medical care when needed.

Is SUDC genetic?

Although rare, we know there are some genetic causes of sudden death that are not discovered by standard autopsy investigations. This is one of the many reasons that we advocate for comprehensive investigations, including genetic testing, for all sudden unexplained deaths, as well as screening of family members. Research will improve our understanding of the specific genetic variations that may contribute to some cases of sudden death that currently fall under SUDC. This could lead to the ability to screen at-risk children and help them receive appropriate medical care. 

What if a specific cause of death is identified for my child? Can the SUDC Foundation still help me?

Yes. The SUDC Foundation can still help you, even if your child’s cause of death is not listed as Sudden Unexplained Death in Childhood (SUDC).

In fact, many families whose child receives a cause of death still find our expertise and community deeply valuable. Our goal is to help you find clarity, connection, and healing—no matter where you are in your journey.

The SUDC Foundation is committed to helping families understand the cause of their child’s death as accurately as possible. In some cases, we may be able to assist with obtaining a second opinion, which can provide clarity, support the grieving process, and help families make informed decisions for the future.

Many families who have received a cause of death still find great value in our no-cost services, including our complimentary postmortem review, forensic support, and trauma-informed grief services.

Is SUDC like Sudden Infant Death Syndrome (SIDS) and/or Sudden Unexplained Infant Death (SUID)?

Terminology by acronym alone can be confusing dependent on location. Sudden Unexpected Infant Death (SUID), as used commonly by public health officials in the United States, refers to the combined rate of the three most frequent types of sudden unexpected deaths in infancy: sudden infant death syndrome (SIDS), accidental suffocation in a sleeping environment and other deaths from unknown causes.4

SUID may also be used by medical examiners and coroners as a final death certification: sudden un-explained infant death. SIDS is “the sudden, unexplained death of an infant younger than 1 year old,” (Eunice Kennedy Shriver National Institute of Child Health and Human Development).

In the United Kingdom, where the term “infant” can refer to children under 24 months, the defini-tion of SIDS differs by age, and describes it as the sudden, unexpected and unexplained death of an apparently healthy baby under 24 months of age [NHS, Department of Health and Social Care (DHSC).] 

SUDC is similar to SUID in that it: 

• occurs in otherwise healthy children, 
• most often during sleep, 
• and has no known explanation. 

There may be other similarities, but research into SUDC is in its early stages and more is needed to better understand how similar or different the underlying causes are. The biggest difference we know is that a child’s death may be certified as SIDS or SUID in the U.S. if the child is less than 12 months of age. A child’s death may be certified as SUDC if he or she is over 1 year old, but under the age of 18.

What do I need to know when enrolling in SUDC Research?

What Parents or Guardians Need to Know About Enrolling in SUDC Research?
 
Participating in a research study following the sudden and unexplained death of a child is a deeply personal decision. For many families affected by SUDC (Sudden Unexplained Death in Childhood), contributing to research can be a meaningful way to honor their child while helping advance understanding for others.
 
This FAQ is designed to help you understand what’s involved, what to expect, and what questions to ask when considering research participation.
 
What is the goal of SUDC-related research?
SUDC research aims to uncover the causes of sudden unexplained deaths in children over 12 months of age, identify potential risk factors, and eventually develop ways to prevent future tragedies. Research areas may include genetics, neurology, cardiology, pathology, sleep science, family history, and/or environmental factors.
 
What types of research studies are available to SUDC families?
Families may be invited to participate in one or more of the following types of studies. Studies vary in focus and requirements. Some examples include:
• Genetic: analyzing DNA from the child and biological parents.
• Medical History and Record Reviews: evaluating the child’s health history from birth through passing including autopsy investigation.
• Neurological: exploring diseases and disorders of the nervous system, which includes the brain, spinal cord, and nerves.
• Cardiac: focusing on diagnosing and treating diseases and disorders of the heart, blood vessels, and circulatory system.
• Immunology: studying the immune system and its functions, both in health and disease. It encompasses understanding how the body defends itself against infections and other threats, as well as how the immune system malfunctions can lead to conditions.
• Surveys or interviews: exploring family experiences, history, or grief. Eligibility and participation may depend on your family’s individual situation and the study design. 
 
What are my rights as a parent, legal guardian, or participant?
You have the right to:
• Receive a clear explanation of the study before enrolling
• Ask questions at any time throughout the duration of the study
• Decline or withdraw from the study at any point without penalty
• Have personal privacy and data protection according to ethical and legal standards
• Know how the data and specimens will be stored and shared. Participation is always voluntary.
 
What is Informed Consent?
Informed consent is a crucial ethical and legal process that protects you and your child’s rights when participating in research. It ensures that personal, medical, and biological information are handled with care and in accordance with laws and research ethics. Before joining a study, you should receive clear, understandable information to help you decide whether to participate—and whether your and/or your child’s data or specimens may be used for future research. Informed consent is a crucial ethical and legal process where potential participants are given complete, understandable information about a study before deciding whether to participate. It ensures voluntary agreement to participate after fully understanding the study’s purpose, procedures, potential risks and benefits, and the right to withdraw at any time. (NIH)
 
Key components of informed consent include:
o Clear explanation of the purpose of the research and procedures: Participants should understand the study’s objectives, methods, and their expected role.
o Description of potential risks and benefits: Participants need to be informed about any potential harm or discomfort, as well as potential benefits to themselves or others.
o Information about confidentiality and data protection: Participants should understand how their personal information and research data will be handled and protected. In most research, participant information is de-identified, meaning your identity is not linked to the data.
o Voluntary participation and right to withdraw: Participants must know that their participation is entirely voluntary and that they can withdraw at any time without penalty or repercussions.
o Contact information: Participants should have access to contact information for the research team and any relevant ethics committees or regulatory bodies. You can ask questions at any time and receive honest, respectful answers.
o Protect participants’ rights and autonomy: By providing information and ensuring voluntariness, informed consent helps ensure that participants are not coerced into participating in research. o Safeguard against unethical practices: Informed consent is a fundamental ethical principle in research, and its proper implementation helps ensure that research is conducted ethically and responsibly
 
If you’re ever unsure, ask:
• How will my family and/or child’s data or specimens be stored?
• Who will have access?
• Who can access the identifiable information?
 
Never hesitate to ask. We encourage you to share any questions or concerns along the way—your comfort, understanding, and trust matter.
 
What questions should I ask before enrolling in a study?
It’s ok to ask many questions as you need to feel informed and comfortable. Consider asking:
• What is the purpose of the study?
• Who is conducting or sponsoring it?
• What will participation involve, and how long will it take?
• What type of data or specimens will be collected?
• Will I need to travel or submit any physical materials?
• How will my data and my child’s data be stored and protected?
• Will I receive any results or findings?
• When will I receive any results or findings?
• Are there any costs or compensation?
• Can I withdraw later if I change my mind?
• If I withdraw from the study, may I request the return of all data and specimens?
 
Will I receive results or updates from the study?
Some studies return individual findings, such as genetic test results or case review summaries. Others only publish collective (aggregate) data. Ask the study coordinator:
• Will the results be shared with you?
• What results will be shared?
• How and when will they be provided?
• Will someone explain the results to me?
 
There is also the possibility that, even after you have received the results of the assessment, your case may be revisited months or even years later as new insights and biotechnologies emerge. 
 
Will participating cost anything?
Most studies are free of charge. Some may offer compensation for time or travel. Be sure to ask:
• Are there any out-of-pocket costs?
• Is travel required and covered?
• Is there compensation for participation?
 
How long will participation take?
This depends on the type of study. Some may take just a few minutes (e.g., an online survey), while others may involve follow-up over months or years. You should ask:
• What is the time commitment?
• Is there a one-time or ongoing component?
 
Will I need to travel or submit physical specimens?
 
Some studies require biospecimens, medical records, or interviews that may involve mailing materials or visiting a medical facility. Others are conducted entirely online or over the phone. Ask:
• Will any travel be required?
• How are materials submitted?
• Can participation be done remotely?
 
How does participating in a study help the SUDC community?
Your participation can:
• Contribute to a better scientific understanding of Sudden unexpected death in children
• Help identify genetic or medical patterns that may one day lead to preventive measures.
• Inform best practices in investigation, care, and support for families.
• Honor your child’s life through meaningful legacy. While research may not provide immediate answers, it brings us closer to a world where SUDC is better understood—and ultimately preventable. 
 
I’m not sure I’m ready—what should I do?

That’s completely okay. Grief is not linear, and participation in research is never an obligation. If and when you feel ready, the SUDC Foundation can help guide you to opportunities that align with your comfort level and interests.

What should I do if I have a concern or issue with a research study I’m participating in?

If you have any questions, concerns, or complaints about a research study you are involved in, you always have the right to contact the Institutional Review Board (IRB) overseeing the study. The IRB is an independent committee that reviews and monitors research involving people to ensure it is conducted ethically and that participants’ rights and welfare are protected.

You can typically find the IRB’s contact information on the last page of your study consent form.

 How can the SUDC Foundation help?
We’re here to:
• Help families explore current research opportunities
• Connect families with ethical, trusted research partners
• Answer questions and advocate for concerns
• Support you and your family before, during, and after participation
 
If you’re thinking about participating in research, we’re here to help. Reach out anytime, and together we’ll explore the options that feel right for you, your family, and your child’s case

References:

1. Krous  HF, Chadwick  AE, Crandall  L, Nadeau-Manning  JM.  Sudden unexpected death in childhood: a report of 50 cases.  Pediatr Dev Pathol. 2005;8(3):307-319

2. Crandall LG, Lee JH, Stainman R, Friedman D, Devinsky O. Potential Role of Febrile Seizures and Other Risk Factors Associated With Sudden Deaths in Children. JAMA Netw Open. Published online April 26, 20192(4):e192739.

3. McGarvey A, O’Regan M, Cryan J, et al. Sudden unexplained death in childhood (1-4 years) in Ireland: an epidemiological profile and comparison with SIDS. Arch Dis Child. 2012;97(8):692-697.

4. Centers for Disease Control and Prevention; Division of Reproductive Health, National Center for Chronic Disease Prevention and Health Promotion, https://www.cdc.gov/sids/ResourceLinks.htm, 2018.

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