The landscape of inter-institutional and multinational collaborations in Kawasaki disease

Objectives Integrated research potentiates evidence-based knowledge, particularly for uncommon diseases such as Kawasaki disease (KD). The 14th International Kawasaki Disease Symposium focussed on “Fostering global collaborations to solve KD,” circulated a 23-question survey highlighting existing collaborations. Methods Information was collected from KD collaborative groups. One or more of the following characteristics defined a collaborative effort: recurrent clinical trials collaborations; international, national, or inter-state research; multi-institutional research; national, government-funded or government-appointed research; epidemiology group; focus group on KD practice and science or other health organization chapters. Results Responses from 21 groups were limited to a single country (67%). The groups had formed between 1991 and 2022. The multi-institutional groups included a median of 1 to 20 countries composed of 2–150 institutions. The groups included 10–20 active members (38%), 20–50 members (38%), 50–100 (14%), or more than 100 members (10%). A majority (67%) of collaborations produced 2–11 peer-reviewed publications. Groups operated under a centralized governance structure (62%), with a steering committee (92%), bylaws (23%), membership fees (8%), or another structure (8%). Only 33% had a written mission statement. While 48% had no formal funding sources, the remainder were funded by granting agencies (29%), governmental funding (24%), private donations and fundraising drives (19%), industry support (10%), and other sources (5%). Conclusions The majority of polled collaborative KD groups are multicenter and national. Despite the lack of funding, most groups demonstrate successful collaborations that result in peer-reviewed publications. There is a need for advocacy to support funding for these important collaborative groups.