Amazing progress: 64 research studies including five notable breakthroughs
Thanks to countless researchers, data scientists, volunteers, supporters, and donors, there have been significant advancements in our research on SIDS.
What is SIDS?
SIDS (Sudden Infant Death Syndrome) is the unexplained death of an infant younger than a year old. Our mission is to imagine a world where no parent has to suffer the fear or loss from SIDS ever again. With relentless hope and scientific breakthroughs as our weapons, we are determined to abolish SIDS.
A Case for Change
SIDS remains the leading cause of death for infants aged one month to one year in the United States and other developed countries. Since 2003, approximately 80,000 US infants have died from SIDS, equivalent to two busloads of children every week. The US ranks 32nd out of 37 developed countries in terms of infant mortality. These alarming statistics underscore the urgency of our work and the need for continued research and intervention.Comprehensive Strategy and Progress
Our comprehensive strategy tackles SIDS from five different approaches: epidemiology, physiology, pathology, genetics, and behavior change. We have made significant progress in each of these areas:
- Epidemiology: We have identified risk factors and potential causes of SIDS through demographic, environmental, and biological analysis. Insights from these studies inform public health campaigns and interventions.
- Physiology: Our research on the normal and abnormal functions of the body, such as heart rate, breathing, and brain activity, has provided crucial insights into why infants succumb to sudden unexpected death.
- Pathology: By examining tissues, organs, and fluids, we have identified abnormalities or undiagnosed conditions that may contribute to sudden death.
- Genetics: We have discovered genetic variations using techniques like whole genome sequencing, transcriptomics, and multi-omics, helping us understand gene expression and molecular interactions that may predispose infants to SIDS.
- Behavior Change: We have focused on modifying parental or caregiver behaviors and practices, such as adopting safe sleep practices and avoiding smoking around infants, to significantly reduce the risk of SIDS.
Scientific Breakthroughs and Achievements
We have publish 64 research studies and achieve five notable scientific breakthroughs from 2017 to 2024:
• Proven, clear link between genetics and SIDS.
• Identification of about 10% of children as high-risk for SIDS.
• Maternal smoking linked to 22% of SIDS cases.
• Clear link between maternal Body Mass Index (BMI) and SIDS.
• Genetic profiles of some SIDS victims similar to adults who die of cardiac arrest.
Additionally, we successfully passed major US legislation, the Scarlett’s Sunshine Act, with 100% bipartisan support and $39 million allocated to states. This legislation improves efforts to understand sudden unexpected infant death (SUID) and sudden unexplained death in children (SUDC).
Future Research and Policy Needs
Looking ahead, we have outlined several future research and policy needs to advance SIDS research further:
• Expanding the genome database to include international samples.
• Performing single-cell transcriptomics and multi-omics studies.
• Applying advanced data analytics to develop risk models.
• Collaborating with the CDC and NIH on new newborn screening solutions.
