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.
第一作者机构：[1]PRINTO, IRCCS G Gaslini, I-16147 Genoa, Italy;[2]Sanjay Gandhi Postgrad Inst Med Sci, Lucknow, Uttar Pradesh, India;[3]Queen Silvia Childrens Hosp, Gothenburg, Sweden;[4]Univ Med Ctr Ljubljana, Ljubljana, Slovenia;[5]Hanyang Univ, Med Ctr, Hosp Rheumat Dis, Seoul 133791, South Korea;[6]Natl Inst Rheumatism & Physiotherapy, Budapest, Hungary;[7]Beijing Childrens Hosp, Beijing, Peoples R China;[8]CS Estrecho Corea, Madrid, Spain;[9]Univ Hosp, Ctr Mother Terza, Tirana, Albania;[10]Fac Med 1, Prague, Czech Republic;[11]Gen Fac Hosp, Prague, Czech Republic;[12]Ain Shams Univ, Cairo, Egypt;[13]Univ Hosp, Rikshosp, Oslo, Norway;[14]Univ Zagreb, Childrens Hosp, Zagreb, Croatia;[15]Zent Krankenhaus, Bremen, Germany;[16]Aristotle Univ Thessaloniki, Ippokration Gen Hosp, GR-54006 Thessaloniki, Greece;[17]Wilhelmina Childrens Hosp, Utrecht, Netherlands;[18]Univ Helsinki, Cent Hosp, Hosp Children & Adolescents, Helsinki, Finland;[19]Inst Portugues Reumatol, Lisbon, Portugal;[20]Univ Children Hosp, Sofia, Bulgaria;[21]Rigshosp, Juliane Marie Centret, Copenhagen, Denmark;[22]Russian Acad Med Sci, Inst Rheumatol, Moscow 109801, Russia;[23]Cerrahpasa Tip Fak, Istanbul, Turkey;[24]Tbilisi State Med Univ, Tbilisi, Georgia;[25]Vilnius State Univ, Vilnius, Lithuania;[26]Hop Necker Enfants Malad, Paris, France;[27]Inst Rheumatol, Warsaw, Poland;[28]Latvian State Univ, LV-1063 Riga, Latvia;[29]Iran Univ Med Sci, Tehran, Iran;[30]Inst Rheumatol, Belgrade, Serbia Monteneg;[31]Kagoshima Univ, Fac Med, Kagoshima 890, Japan;[32]Meir Med Ctr, Kefar Sava, Israel;[33]Univ Hosp, Kosice, Slovakia;[34]Great Ormond St Hosp Sick Children, London WC1N 3JH, England;[35]Univ Genoa, Genoa, Italy;[36]PRINTO, IRCCS G Gaslini, Largo Gaslini 5, I-16147 Genoa, Italy
通讯作者：
通讯机构：[1]PRINTO, IRCCS G Gaslini, I-16147 Genoa, Italy;[2]Sanjay Gandhi Postgrad Inst Med Sci, Lucknow, Uttar Pradesh, India;[3]Queen Silvia Childrens Hosp, Gothenburg, Sweden;[4]Univ Med Ctr Ljubljana, Ljubljana, Slovenia;[5]Hanyang Univ, Med Ctr, Hosp Rheumat Dis, Seoul 133791, South Korea;[6]Natl Inst Rheumatism & Physiotherapy, Budapest, Hungary;[7]Beijing Childrens Hosp, Beijing, Peoples R China;[8]CS Estrecho Corea, Madrid, Spain;[9]Univ Hosp, Ctr Mother Terza, Tirana, Albania;[10]Fac Med 1, Prague, Czech Republic;[11]Gen Fac Hosp, Prague, Czech Republic;[12]Ain Shams Univ, Cairo, Egypt;[13]Univ Hosp, Rikshosp, Oslo, Norway;[14]Univ Zagreb, Childrens Hosp, Zagreb, Croatia;[15]Zent Krankenhaus, Bremen, Germany;[16]Aristotle Univ Thessaloniki, Ippokration Gen Hosp, GR-54006 Thessaloniki, Greece;[17]Wilhelmina Childrens Hosp, Utrecht, Netherlands;[18]Univ Helsinki, Cent Hosp, Hosp Children & Adolescents, Helsinki, Finland;[19]Inst Portugues Reumatol, Lisbon, Portugal;[20]Univ Children Hosp, Sofia, Bulgaria;[21]Rigshosp, Juliane Marie Centret, Copenhagen, Denmark;[22]Russian Acad Med Sci, Inst Rheumatol, Moscow 109801, Russia;[23]Cerrahpasa Tip Fak, Istanbul, Turkey;[24]Tbilisi State Med Univ, Tbilisi, Georgia;[25]Vilnius State Univ, Vilnius, Lithuania;[26]Hop Necker Enfants Malad, Paris, France;[27]Inst Rheumatol, Warsaw, Poland;[28]Latvian State Univ, LV-1063 Riga, Latvia;[29]Iran Univ Med Sci, Tehran, Iran;[30]Inst Rheumatol, Belgrade, Serbia Monteneg;[31]Kagoshima Univ, Fac Med, Kagoshima 890, Japan;[32]Meir Med Ctr, Kefar Sava, Israel;[33]Univ Hosp, Kosice, Slovakia;[34]Great Ormond St Hosp Sick Children, London WC1N 3JH, England;[35]Univ Genoa, Genoa, Italy;[36]PRINTO, IRCCS G Gaslini, Largo Gaslini 5, I-16147 Genoa, Italy
推荐引用方式(GB/T 7714)：
Ruperto N,Garcia-Munitis P,Villa L,et al.PRINTO/PRES international website for families of children with rheumatic diseases: www.pediatric-rheumatology.printo.it[J].ANNALS OF THE RHEUMATIC DISEASES.2005,64(7):1101-1106.doi:10.1136/ard.2004.030221.
APA：
Ruperto, N,Garcia-Munitis, P,Villa, L,Pesce, M,Aggarwal, A...&Martini, A.(2005).PRINTO/PRES international website for families of children with rheumatic diseases: www.pediatric-rheumatology.printo.it.ANNALS OF THE RHEUMATIC DISEASES,64,(7)
MLA：
Ruperto, N,et al."PRINTO/PRES international website for families of children with rheumatic diseases: www.pediatric-rheumatology.printo.it".ANNALS OF THE RHEUMATIC DISEASES 64..7(2005):1101-1106
医学