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
- physicians work force survey
- paediatric rheumatic diseases
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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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