The existence of large networks such as the Pediatric Rheumatology Collaborative Study Group (PRCSG) and the Paediatric Rheumatology International Trials Organization (PRINTO), the Pediatric Rheumatology European Society (PRES) and more recently the Childhood Arthritis (Research Alliance (CARRA) has greatly facilitated the possibility of implementing collaborative studies either academic or in collaboration with pharmaceutical companies in the field of pediatric rheumatology.
In the last few years PRINTO has concentrated its efforts to provide facilities to its membership for the conduct of international research projects. The ongoing initiative are as follow:
A pharmacovigilance registry for children with juvenile idiopathic arthritis (JIA) treated with biologics ± methotrexate and financed by the European Union which has collected data for almost 6000 JIA children. A sub-project called Abirisk, in collaboration with an adult international consortium financed by IMI, is evaluating the development of antibodies against biologic drugs and its correlations with safety and efficacy results.
The Eurofever registry has collected clinical and laboratory data for almost 3,000 children and adults with auto-inflammatory syndromes.
The EPidemiology, treatment and Outcome of Childhood Arthritis throughout the world (EPOCA) study has collected has the goal to define and compare the epidemiology, treatment and outcome of the JIA categories around the world. The project has collected more than 7,000 JIA patients and 2,000 healthy controls.
Another project has the goal to develop new classification criteria for macrophage activation syndromes (MAS) in systemic JIA and has collected 360 MAS cases and 750 controls (400 systemic JIA cases without MAS and 350 sepsis).
In addition PRINTO is working to update information for families of children with pediatric rheumatic diseases (www.pediatric-rheumatology.printo.it) and characterize the current pattern of care through the Share project financed by the EU.
The PRINTO networks can be seen as a model for international cooperation in rheumatology and other paediatric subspecialties.
Disclosure of Interest N. Ruperto Grant/Research support from: The Gaslini Hospital, which is the public Hospital where I work as full time employee, has received contributions to support the PRINTO research activities from industries: Abbott, BMS, “Francesco Angelini”, GlaxoSmithKline (GSK), Hoffman-La Roche, Italfarmaco, Janssen, Novartis, Pfizer, Sanofi Aventis, Schwarz Biosciences, Sobi, Xoma, Wyeth, Conflict with: Abbott, AbbVie, Astellas, Alter, AstraZeneca, Boehringer, BMS, CD-Pharma,Hoffman-La Roche, Italfarmaco, Janssen, MedImmune, Medac, Novartis, Novo Nordisk, Pfizer, Sanofi Aventis, Vertex Pharmaceuticals Servier
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