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International research networks in pediatric rheumatology: the PRINTO perspective

Nicolino Ruperto1, Alberto Martini

  • 1IRCCS G. Gaslini, Università di Genova, Pediatria II-Reumatologia, Genova, Italy. nicolaruperto@ospedale-gaslini.ge.it

Current Opinion in Rheumatology
|August 18, 2004
PubMed

Insights

International research networks like PRINTO and PRCSG address challenges in pediatric rheumatic diseases research. Standardized measures and validated instruments improve treatment assessments for children.

Area of Science:

  • Rheumatology
  • Pediatric Research
  • Clinical Trials

Background:

  • Pediatric rheumatic diseases are rare, impacting quality of life and long-term outcomes.
  • Researching new therapies faces logistic, methodological, and ethical hurdles.
  • International collaboration is crucial for advancing pediatric rheumatology.

Purpose of the Study:

  • To identify challenges in international collaborative research for pediatric rheumatic diseases.
  • To present solutions and successful models for conducting such research.
  • To highlight the importance of networks in pediatric rheumatology research.

Main Methods:

  • Establishment of international networks: Pediatric Rheumatology Collaborative Study Group (PRCSG) and Paediatric Rheumatology international Trials Organization (PRINTO).
  • Development and standardization of outcome measures and response criteria.
  • Cross-cultural adaptation and validation of quality-of-life instruments.

Main Results:

  • Standardized evaluation of therapeutic response in juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis.
  • Defined clinical remission criteria for juvenile idiopathic arthritis.
  • Validated quality-of-life instruments (e.g., Childhood Health Assessment Questionnaire) in 32 languages.

Conclusions:

  • International trial networks (PRINTO, PRCSG) are essential for pediatric rheumatic diseases research.
  • Standardized outcome measures and validated instruments enhance assessment quality.
  • Progress enables children to benefit from evidence-based treatments comparable to adults.
Abstract

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