Research project manager CHU Sainte-Justine Montreal, Quebec, Canada
Background: Integrated research potentiates evidence-based knowledge. During the organization of the 2024 IKDS, themed around “Fostering global collaborations to solve KD”, a 23-question survey was conducted to highlight existing collaborations around the globe. Methods: Basic information was collected on a voluntary basis from KD collaborative groups, whether focused on science, clinical care or advocacy. The following characteristics defined a collaborative effort: recurrent collaboration in clinical trials; international, national, or inter-state research; multi-institutional research; national, government-funded or government-appointed research; epidemiology group; focus group interested in KD practice and science or other health organization chapters. Results: From 26 contacts, 20 groups responded to the survey. The year of inception ranged from 1991 to 2022. Most groups were limited to a single country (70%) and the multinational groups included a median number of 4 [2-20] countries. The number of institutions actively taking part in a given collaboration averaged 37 [1-150]. The collaborative groups included 10-20 active members for 40%, 20-50 members for 35%, 50-100 for 15% and more than 100 active members for 10%. A majority (65%) of collaborations had produced an average of 5 (2-11) peer-reviewed publications.Groups mainly operated under a centralized governance structure (65%). Of these, 92% had a steering committee, 23% had bylaws, 8% had membership fees and 8% used another structure. Only 40% of the collaborative groups had a written mission statement. Main research focuses included clinical cardiology (65%), epidemiology/population (50%), general clinical (40%), rheumatology/immunology clinical (35%), human genetics (20%), big data/computational science (15%), social issues/patient advocacy (10%) and other (5%). The research approaches were retrospective (65%), prospective/observational (50%), survey/poll (50%), cross-sectional (40%), clinical trial (15%), meta-analysis (5%) and other (25%). More than half (55%) had no formal funding sources, with each center supporting their own effort. The remainder of groups were funded from granting agencies (30%), governmental funding (20%), private donations and fundraising drives (20%), industry support (5%) and other sources (5%). Conclusion: The variety of existing collaborative KD initiatives are mainly multicenter and national. Notably, most groups operate without funding; nevertheless, the majority are successful in publishing their findings and have an established administrative structure. The survey results highlight successful collaborations and provide encouragement to foster new ones. Working together makes KD research rich and diversified, accomplishing major scientific advances and improving patient outcomes.The results also suggest the need for advocacy to support funding initiatives specific to KD.
