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Network in pediatric rheumatology: the example of the Pediatric Rheumatology International Trials Organization 
 
Network in pediatric rheumatology: the example of the Pediatric Rheumatology International Trials Organization
  Nicolino Ruperto, Alberto Martini
 [Abstract] [Full Text] [PDF]   Pageviews: 9786 Times
  Genova, Italy

Author Affiliations: IRCCS Istituto G. Gaslini, Pediatria II, Reumatologia and University of Genoa, Genoa, Italy (Ruperto N, Martini A)

Corresponding Author: Nicolino Ruperto, IRCCS Istituto G. Gaslini, Pediatria II-PRINTO Largo Gaslini, 516147, Genova, Italy (Tel: +39-010- 382854/+39-010-3393425; Fax: +39-010-393324/+39-010-3393619; Email: nicolaruperto@ospedale-gaslini.ge.it)

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.

Key words: collaborative research; clinical trials; pediatric rheumatic diseases; quality of life

                   World J Pediatr 2008;4(3):186-191

 

 
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