PRINTO/PRES国际风湿性疾病患儿家庭网站：www.pediatric-rheumatology.printo.it 。
PRINTO/PRES international website for families of children with rheumatic diseases: www.pediatric-rheumatology.printo.it.
作者信息
Ruperto N, Garcia-Munitis P, Villa L, Pesce M, Aggarwal A, Fasth A, Avcin T, Bae S-C, Balogh Z, Li C, De Inocencio J, Dibra M, Dolezalova P, El Miedany Y, Flato B, Harjacek M, Huppertz H-I, Kanakoudi-Tsakalidou F, Wulffraat N, Lahdenne P, Melo-Gomes J A, Mihaylova D, Nielsen S, Nikishina I, Ozdogan H, Pagava K, Panaviene V, Prieur A-M, Romicka A-M, Rumba I, Shafaie N, Susic G, Takei S, Uziel Y, Vesely R, Woo P, Martini A
机构信息
Paediatric Rheumatology INternational Trials Organisation (PRINTO), IRCCS G. Gaslini, Pediatria II Reumatologia, Largo Gaslini, 5, 16147 Genova, Italy.
出版信息
Ann Rheum Dis. 2005 Jul;64(7):1101-6. doi: 10.1136/ard.2004.030221. Epub 2005 Mar 10.
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.
目的
为家庭和健康专业人员创建一个网站，提供有关儿童风湿性疾病（PRD）的最新信息。
方法
首先，对儿童风湿病中心和家庭自助协会进行调查，以了解为PRD患儿提供护理的医生的当前临床实践、各中心的研究活动和培训设施。其次，就网站内容达成国际共识。最后，开发网站并翻译文本。
结果
该网页包含三个主要部分：（a）向家庭介绍15种PRD的特征；（b）儿童风湿病中心列表；（c）家庭自助协会的联系信息。现在该网站有52种语言、面向45个国家的版本（另有三个版本正在制作中）。收到了来自42个国家171个中心和一百零二个家庭协会的291份调查问卷。在所调查的中心中，儿科实践时间的中位数比例为100%，其中70%的时间用于儿童风湿病。90%的中心愿意在未来开展临床试验。
结论
PRINTO/PRES网站提供了一套关于PRD的明确且全面的信息，有适当的多种翻译版本且网页导航方便。
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