Global collaboration can improve diagnosis and care for children with Kawasaki disease

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. 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."

Ashraf S. Harahsheh, M.D., FAHA, chair of the science advisory writing group, director of both the Kawasaki Disease Program and the Quality Outcomes in Cardiology Program for Children's National Hospital, Washington, D.C.

What is Kawasaki disease?

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 (blood vessels supplying the heart), and it is the leading cause of acquired (not congenital) heart disease in children. Symptoms of Kawasaki disease include fever, rash, red lips and "strawberry tongue" (bumpy and red with enlarged taste buds). Prompt treatment is critical to prevent progression to serious cardiovascular complications, and most children recover fully with treatment.

Although the cause of Kawasaki disease remains unknown, there is a strong suspicion that it may be an abnormal immune response to a trigger, such as an infectious illness in a genetically susceptible child. However, no single agent has been identified yet. 

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 to optimal outcomes, particularly in countries and communities with fewer health resources. If left untreated, approximately one in four children with Kawasaki disease 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. These gains have often been driven by strong research collaborations, shared expertise and coordinated treatment plans. 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 the cultural needs of local communities, prioritize uncovering and reducing barriers to care, monitor results to improve outcomes and promote evidence-based care across regions, particularly in LMICs. Effective international collaboration must account for differences in communities, including culture, language, time zones and available resources at participating sites. In addition, including patients, families and advocacy groups is important to support patient-centered care and improve access to 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. Sharing this information can lead to better care and ongoing improvements. Future international efforts to improve care for Kawasaki disease should focus on working together to improve quality, building local expertise, mentoring clinical leaders and strengthening care systems in low‑ and middle‑income countries, where access to care is often most limited," Harahsheh said.