International collaboration in research, diagnosis and care is critical to reducing the risk of serious heart conditions for children with Kawasaki disease worldwide, according to a new science advisory published today in the Journal of the American Heart Association, an open access, peer-reviewed journal of the American Heart Association.
“Kawasaki disease is highly treatable, yet too many children around the world face delayed diagnosis or limited access to care,” said the chair of the science advisory writing group, Ashraf S. Harahsheh, M.D., FAHA, director of both the Kawasaki Disease Program and the Quality Outcomes in Cardiology Program for Children’s National Hospital in Washington, D.C. “This science advisory underscores the power of international collaboration to advance research and improve care for patients everywhere. By sharing data, expertise and best practices, we can reduce disparities and improve heart health outcomes for children with Kawasaki disease, wherever they live.”
Kawasaki disease is a rare but serious illness primarily affecting children younger than five years old. The disease can cause inflammation of blood vessels throughout the body, particularly the coronary arteries, and it is the leading cause of acquired heart disease in children. Symptoms include fever, rash, red lips and “strawberry tongue.” Prompt treatment is critical to prevent serious cardiovascular complications, and most children recover fully with treatment. Although the cause remains unknown, there is a strong suspicion that it may be an abnormal immune response to a trigger in a genetically susceptible child.
It is estimated that more than 4,200 children are diagnosed with Kawasaki disease in the U.S. each year. According to a 2024 American Heart Association scientific statement on Kawasaki disease, the disease occurs 10-30 times more often in countries in East Asia, including Japan, South Korea, China and Taiwan.
Highlights of the advisory include: Early diagnosis and treatment are critical. Delayed diagnosis remains a major barrier, particularly in countries with fewer health resources. If left untreated, approximately one in four children may develop coronary artery aneurysm. Prompt treatment with intravenous immunoglobulin (IVIG) can reduce the risk of aneurysm to less than 5%. Strengthening diagnostic and treatment capacity in regions where access to care is most limited is essential.
Collaboration has improved care, yet gaps remain. Advances in Kawasaki disease management have been most successful in large, experienced and economically advanced countries, often driven by strong research collaborations and shared expertise. In recent years, additional collaborative efforts have emerged at regional, national and international levels, including in low- and middle-income countries (LMICs). However, most current Kawasaki disease collaborative networks do not have formal funding.
A global, harmonized approach is needed. The advisory calls for inclusive international collaborations that consider cultural needs, prioritize reducing barriers to care, monitor results to improve outcomes, and promote evidence-based care across regions, particularly in LMICs. Effective collaboration must account for differences in culture, language, time zones and available resources. Including patients, families and advocacy groups is important to support patient-centered care.
“When hospitals and health systems work together and compare how well they are doing, it can help identify local or regional challenges - such as gaps in resources or access to care - that need to be addressed,” Harahsheh said. “Future international efforts should focus on working together to improve quality, building local expertise, mentoring clinical leaders and strengthening care systems in low- and middle-income countries.”
This science advisory was prepared by the volunteer writing group on behalf of the American Heart Association’s Rheumatic Fever, Endocarditis, Kawasaki Disease Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young. Science advisories inform the development of scientific statements and guidelines; however, they do not make treatment recommendations.
Additional resources are available in the news release and the manuscript online.
