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PRINTO/PRES international website for families of children with rheumatic diseases: www.pediatric-rheumatology.printo.it
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  1. N Ruperto1,
  2. P Garcia-Munitis1,
  3. L Villa1,
  4. M Pesce1,
  5. A Aggarwal2,
  6. A Fasth3,
  7. T Avcin4,
  8. S-C Bae5,
  9. Z Balogh6,
  10. C Li7,
  11. J De Inocencio8,
  12. M Dibra9,
  13. P Dolezalova10,
  14. Y El Miedany11,
  15. B Flato12,
  16. M Harjacek13,
  17. H-I Huppertz14,
  18. F Kanakoudi-Tsakalidou15,
  19. N Wulffraat16,
  20. P Lahdenne17,
  21. J A Melo-Gomes18,
  22. D Mihaylova19,
  23. S Nielsen20,
  24. I Nikishina21,
  25. H Ozdogan22,
  26. K Pagava23,
  27. V Panaviene24,
  28. A-M Prieur25,
  29. A-M Romicka26,
  30. I Rumba27,
  31. N Shafaie28,
  32. G Susic29,
  33. S Takei30,
  34. Y Uziel31,
  35. R Vesely32,
  36. P Woo33,
  37. A Martini1,34,
  38. for the Paediatric Rheumatology International Trials Organisation (PRINTO) and the Paediatric Rheumatology European Society (PRES)
  1. 1IRCCS G. Gaslini, Pediatria II Reumatologia, PRINTO, Genova, Italy
  2. 2Sanjay Gandhi Institute of Medical Sciences, Lucknow, India
  3. 3The Queen Silvia Children’s Hospital, Göteborg, Sweden
  4. 4University Medical Centre Ljubljana, Ljubljana, Slovenia
  5. 5The Hospital for Rheumatic Diseases, Hanyang University Medical Centre, Seoul, South Korea
  6. 6National Institute of Rheumatology and Physiotherapy, Budapest, Hungary
  7. 7Beijing Children’s Hospital, Capital, Beijing, China
  8. 8CS Estrecho de Corea, Madrid, Spain
  9. 9University Hospital Centre Mother Terza, Tirana, Albania
  10. 101st Faculty of Medicine and General Faculty Hospital, Prague, Czech Republic
  11. 11Ain Shams University, Cairo, Egypt
  12. 12Rikshospitalet University Hospital, Oslo, Norway
  13. 13Children’s Hospital Zagreb, Zagreb, Croatia
  14. 14Zentralkrankenhaus, Bremen, Germany
  15. 15Aristotle University of Thessaloniki - Ippokration General Hospital, Thessaloniki, Greece
  16. 16Wilhelmina Kinderziekenhuis, Utrecht, Netherlands
  17. 17Hospital for Children and Adolescents, Helsinki University Central Hospital, Helsinki, Finland
  18. 18Instituto Portugues de Reumatologia, Lisbon, Portugal
  19. 19University Children Hospital, Sofia, Bulgaria
  20. 20Juliane Marie Centret, Rigshospitalet, København, Denmark
  21. 21Institute of Rheumatology RAMS, Moscow, Russia
  22. 22Cerrahpasa Tip Fakültesi, Istanbul, Turkey
  23. 23Tbilisi State Medical University, Tbilisi, Georgia
  24. 24Vilnius University, Vilnius, Lithuania
  25. 25Hôpital Necker Enfants Malades, Paris, France
  26. 26Institute of Rheumatology, Warsaw, Poland
  27. 27University of Latvia, Riga, Latvia
  28. 28Iran University of Medical Sciences, Teheran, Iran
  29. 29Institute of Rheumatology, Belgrade, Belgrade, Serbia Montenegro
  30. 30Faculty of Medicine, Kagoshima University, Kagoshima city, Japan
  31. 31Meir Medical Centre, Kfar Saba, Israel
  32. 32University Hospital, Kosice, Slovakia
  33. 33Great Ormond Street Children Hospital, London, UK
  34. 34Università di Genova, Genova, Italy
  1. Correspondence to:
    Dr N Ruperto
    Paediatric Rheumatology INternational Trials Organisation (PRINTO), IRCCS G. Gaslini, Pediatria II Reumatologia, Largo Gaslini, 5, 16147 Genova, Italy; nicolarupertoospedale-gaslini.ge.it

Abstract

Objective: To prepare a website for families and health professionals containing up to date information about paediatric rheumatic diseases (PRD).

Methods: Firstly, paediatric rheumatology centres and family self help associations were surveyed to characterise current clinical practice of physicians providing care for children with PRD, research activities, and training facilities of each centre. Secondly, international consensus was reached on the content of the website. Finally, the website was developed and the texts translated.

Results: The web page contains three main sections: (a) description for families of the characteristics of 15 PRD; (b) list of paediatric rheumatology centres; (c) contact information for family self help associations. A version for 45 countries in 52 languages (with another three in progress) is now available on the web. 291 surveys from 171 centres and 102 family associations were received from 42 countries. The median proportion of time spent in paediatric practice in the centres examined was 100%, with 70% of this time dedicated to paediatric rheumatology. 90% of the centres were willing to perform clinical trials in the future.

Conclusions: The PRINTO/PRES website provides a well defined and competent set of information about PRD, with appropriate multiple translated versions and easy web navigational direction.

  • PRD, paediatric rheumatic diseases
  • PRES, Paediatric Rheumatology European Society
  • PRINTO, Paediatric Rheumatology International Trials Organization
  • website
  • physicians work force survey
  • paediatric rheumatic diseases
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Footnotes

  • Additional PRINTO national coordinators who adapted the original translation to the language of their country: Sulaiman Al-Mayouf, MD (Riyadh, Saudi Arabia), Boel Andersson-Gare (Jonkoping, Sweden), Rym Hajri Ben Ammar, MD (El Menzah, Tunisia), Ruben Burgos-Vargas, MD (Mexico City, Mexico), Cecilia Coto Hermosilla, MD (Habana, Cuba), Carmen de Cunto, MD (Buenos Aires, Argentina), Stella Maris Garay, MD (La Plata, Argentina), Michaël Hofer, MD (Lausanne, Switzerland), Christian Huemer, MD, Prof (Bregenz, Austria), Rik Joos, MD (Gent, Belgium), Anton Jordi, MD (Barcelona, Spain), Claudia Machado, MD (Botucatu, Brasil), Marta Miranda, MD (Providencia Santiago de Chile, Chile), Kevin Murray, MB.BS., FRACP (Perth, WA, Australia), Oscar Porras, MD, PhD Chief Immunology (San Jose, Costa Rica), Madeleine Rooney, MD, MRCP (Belfast, Ireland), Yvonne See, MD (Singapore, Singapore), Charles Spencer (Chicago, IL, USA).All authors declare that they (a) provided a substantial contribution to the conception and design, or acquisition of data, or analysis and interpretation of data; (b) participated in the drafting the article or revising it critically for important intellectual content; (c) approved the final version to be published; (d) have no relevant financial interest in the manuscript.Written permission was obtained from all people named in the “Acknowledgements”.

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