Nicolino Ruperto1, Alberto Martini. 1. IRCCS Istituto G. Gaslini, Pediatria II, Reumatologia, Genoa, Italy. nicolaruperto@ospedale-gaslini.ge.it
Abstract
BACKGROUND: Pediatric rheumatic diseases (PRDs) are rare conditions associated with significant sequelae affecting the quality of life and long-term outcome. The research aimed at studying new therapeutic approaches is difficult because of logistic, methodological and ethical problems. DATA SOURCES: To address these problems, two international networks, the Pediatric Rheumatology Collaborative Study Group (PRCSG) and the Pediatric Rheumatology International Trials Organization (PRINTO) were established. The two networks share the goal to promote, facilitate and conduct high quality research for PRDs. RESULTS: The PRINTO and PRCSG networks have standardized the evaluation of response to therapy in juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus, and juvenile dermatomyositis, drafted clinical remission criteria in JIA, and provided cross-cultural adapted and validated quality of life instruments including the Childhood Health Assessment Questionnaire and the Child Health Questionnaire into 32 different languages. In this paper we reviewed how the networks of the PRINTO and PRCSG have created the basic premises for the best future assessment of PRDs. CONCLUSIONS: The PRINTO and PRCSG networks can be regarded as a model for international cooperation or collaboration in other pediatric subspecialties.
BACKGROUND: Pediatric rheumatic diseases (PRDs) are rare conditions associated with significant sequelae affecting the quality of life and long-term outcome. The research aimed at studying new therapeutic approaches is difficult because of logistic, methodological and ethical problems. DATA SOURCES: To address these problems, two international networks, the Pediatric Rheumatology Collaborative Study Group (PRCSG) and the Pediatric Rheumatology International Trials Organization (PRINTO) were established. The two networks share the goal to promote, facilitate and conduct high quality research for PRDs. RESULTS: The PRINTO and PRCSG networks have standardized the evaluation of response to therapy in juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus, and juvenile dermatomyositis, drafted clinical remission criteria in JIA, and provided cross-cultural adapted and validated quality of life instruments including the Childhood Health Assessment Questionnaire and the Child Health Questionnaire into 32 different languages. In this paper we reviewed how the networks of the PRINTO and PRCSG have created the basic premises for the best future assessment of PRDs. CONCLUSIONS: The PRINTO and PRCSG networks can be regarded as a model for international cooperation or collaboration in other pediatric subspecialties.
Authors: N Ruperto; P Garcia-Munitis; L Villa; M Pesce; A Aggarwal; A Fasth; T Avcin; S-C Bae; Z Balogh; C Li; J De Inocencio; M Dibra; P Dolezalova; Y El Miedany; B Flato; M Harjacek; H-I Huppertz; F Kanakoudi-Tsakalidou; N Wulffraat; P Lahdenne; J A Melo-Gomes; D Mihaylova; S Nielsen; I Nikishina; H Ozdogan; K Pagava; V Panaviene; A-M Prieur; A-M Romicka; I Rumba; N Shafaie; G Susic; S Takei; Y Uziel; R Vesely; P Woo; A Martini Journal: Ann Rheum Dis Date: 2005-03-10 Impact factor: 19.103
Authors: R Gutiérrez-Suárez; A Pistorio; A Cespedes Cruz; X Norambuena; B Flato; I Rumba; M Harjacek; S Nielsen; G Susic; D Mihaylova; C Huemer; J Melo-Gomes; B Andersson-Gare; Z Balogh; C De Cunto; R Vesely; K Pagava; A M Romicka; R Burgos-Vargas; A Martini; N Ruperto Journal: Rheumatology (Oxford) Date: 2006-07-28 Impact factor: 7.580
Authors: Nicolino Ruperto; Kevin J Murray; Valeria Gerloni; Nico Wulffraat; Sheila Knupp Feitosa de Oliveira; Fernanda Falcini; Pavla Dolezalova; Maria Alessio; Ruben Burgos-Vargas; Fabrizia Corona; Richard Vesely; Helen Foster; Joyce Davidson; Francesco Zulian; Line Asplin; Eileen Baildam; Julia Garcia Consuegra; Huri Ozdogan; Rotraud Saurenmann; Rik Joos; Angela Pistorio; Pat Woo; Alberto Martini Journal: Arthritis Rheum Date: 2004-07