Our Research Framework: Priorities, Oversight, and Processes
The SUDC Foundation is committed to funding scientific research projects with sound rationale that seek to better understand Sudden Unexplained Death in Childhood (SUDC), improve investigations, and ultimately prevent these tragic losses. Through scientific partnerships, rigorous peer review, and family-centered values, we strive to accelerate the search for answers.
What We Fund
We support research that aligns with our values and core funding priorities, including:
Identification of potential causes or mechanisms of SUDC
Improved investigative and diagnostic protocols
Genetic, neuropathological, and epidemiological studies
Projects that center the voice and experience of affected families
Our Process
Grants are awarded through a competitive application process, guided by our Scientific Advisory Board.
Our Oversight
Meet Our Scientific Advisory Board
The Scientific Advisory Board is composed of diverse experts with high acumen in fields relevant to SUDC, including pediatric pathology, genetics, neuroscience, epidemiology, clinical research, and grants management.
Their collective expertise ensures that each application is assessed with scientific rigor, ethical integrity, and compassion for the families at the heart of our work.
In addition to reviewing grant applications, the Scientific Advisory Board plays a pivotal role in guiding the Foundation’s research strategy and advising the Board of Directors on research priorities. Their contributions help ensure that our research investments are directed toward the most promising and impactful studies. The creation of the Scientific Advisory Board also underscores the Foundation’s commitment to fostering collaboration and innovation within the scientific community as we work toward a future free of SUDC.
How We Fund
There is currently no public funding dedicated to Sudden Unexplained Death in Childhood (SUDC). That means every study we support is made possible through the generosity of individuals, families, and private donors who believe in the urgency of this work.
The SUDC Foundation is the leading private funder of SUDC research, fueling critical projects that seeks to understand why these tragedies happen—and how we can prevent them.
Your support makes this possible. When you give, you’re not just funding research—you’re helping families find answers and driving science forward.
Every dollar brings us closer to answers—and a world without SUDC.
Driving Scientific Discovery Through Collaborative Partnerships and Funding Initiatives
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.
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.
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 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.
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 protections according to ethical and legal standards
• Know how the data and specimens, will be stored and shared. Participation is always voluntary
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:
- Clear explanation of the purpose of the research and procedures: Participants should understand the study’s objectives, methods, and their expected role.
- 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.
- 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.
- 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.
- 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.
- Protect participants’ rights and autonomy: By providing information and ensuring voluntariness, informed consent helps ensure that participants are not coerced into participating in research.
- 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.
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Grant Application Information Coming Soon.
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