CARRA is a network of pediatric rheumatologists that was formed to answer top-priority questions with potential to improve the care of children with rheumatic diseases.  Soon after its establishment, this group surveyed its members to define its research priorities and identified uveitis (JRA, sarcoid, or idiopathic) unresponsive to methotrexate treated with infliximab as the top priority for a single-arm treatment trial in this research network. Other top-priority single-arm trials included systemic onset JRA treated with anakinra and pediatric SLE treated with mycophenolate mofetil. The Delphi approach was a feasible and successful method to identify these research priorities.
To our knowledge, this is the first study of its kind in this subspecialty. Most published literature on pediatric rheumatology priorities focus on enhancing residency programs and the need for expansion of the subspecialty [17–20]. The Pediatric Rheumatology International Trials Organization (PRINTO) has not surveyed its members to determine research priorities on an international level (personal communication, January 16, 2007), and to our knowledge there have been no initiatives in other countries or regions to establish such priorities. A survey of pediatric rheumatologists in North America and Europe was performed to determine types of ongoing trials in the field, to identify any problems encountered in these trials, and willingness to participate in collaborative studies but did not identify actual research topics or priorities.
We surveyed all CARRA members and achieved a high response rate; however there are a substantial number of pediatric rheumatologists that are not affiliated with CARRA and are therefore not represented in our study. As it is a North American network, the opinions of those who practice or do research in other continents are also not included. Pediatric rheumatology research priorities in North America may differ substantially from those in Europe or the developing world due to differences in availability of medications, access to health care, referral patterns, and cultural acceptability of treatment, and thus our survey results represent only the opinions of a subset of North American pediatric rheumatologists.
CARRA is a large organization that, at the time of our survey had 107 members and has now grown to 171 members. Members are typically interested in research and represent a sizable proportion of pediatric rheumatologists in North America. There were 34 physicians taking care of children with rheumatic diseases in Canada in the year this survey was conducted (personal communication, August 8, 2007) of which nine were CARRA members; and there were an estimated 192 to 215 board certified pediatric rheumatologists in the United States (personal communication, American Board of Pediatrics, August 8, 2007) of which 92 were contacted for this survey. Over 40% of those treating children with rheumatic diseases were therefore represented in our survey. Six additional CARRA members are sponsored members with PhD degrees with expertise in pediatric rheumatology. With our high response rate, we are confident that our results are reasonably representative of those pediatric rheumatologists in North America with research interests.
The process that was undertaken by this group has resulted in the identification of important research ideas, with the two most highly-endorsed topics currently moving forward for scientific investigation. A request-for-proposals was put forth to investigate the top-rated suggestion of infliximab treatment in patients with persistent uveitis, and a CARRA-funded study is currently underway. A proposal for investigating the treatment effect of IL-1 inhibition in patients with systemic-onset juvenile arthritis has also been developed by CARRA investigators and has secured funding.