PRINTO/PRES international website for families of children with rheumatic diseases:

Ruperto, N. and Garcia-Munitis, P. and Villa, L. and Pesce, M. and Aggarwal, A. and Fasth, A. and Avcin, T. and Bae, S.-C. and Balogh, Z. and Li, C. and De Inocencio, J. and Dibra, M. and Dolezalova, P. and El Miedany, Y. and Flato, B. and Harjacek, M. and Huppertz, H.-I. and Kanakoudi-Tsakalidou, F. and Wulffraat, N. and Landenne, P. and Melo-Gomes, J.A. and Mihaylova, D. and Nielsen, S. and Nikishina, I. and Ozdoqan, H. and Pagava, K. and Panaviene, V. and Prieur, A.-M. and Romicka, A.-M. and Rumba, I. and Shafaie, N. and Susic, G. and Takei, S. and Uziel, Y. and Vesely, R. and Woo, P. and Martini, A. (2005) PRINTO/PRES international website for families of children with rheumatic diseases: Annals of the Rheumatic Diseases, 64 (7). pp. 1101-1106.

Annals of the Rheumatic Diseases Volume 64 issue 7 2005 [doi 10.1136_ard.2004.030221] Ruperto, N -- PRINTO_PRES international website for families of children with rheumatic diseases- www.pediatric-.pdf

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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.

Item Type: Article
Additional Information: cited By 19
Uncontrolled Keywords: article; child; childhood disease; family; health care personnel; human; Internet; language; medical information system; medical research; organization; pediatrician; priority journal; rheumatic disease; self help, Child; Education, Medical, Continuing; Humans; Information Dissemination; International Cooperation; Internet; Patient Education; Pediatrics; Rheumatic Diseases; Rheumatology
Subjects: WE Musculoskeletal System
Depositing User: Librarian Farzaneh Dini
Date Deposited: 12 May 2019 09:32
Last Modified: 12 May 2019 09:32

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