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

www.pediatric-rheumatology.printo.it

N. Ruperto, P. Garcia-Munitis, L. Villa, M. Pesce, A. Aggarwal, A. Fasth, T. Avcin, S. C. Bae, Z. Balogh, C. Li, J. De Inocencio, M. Dibra, P. Dolezalova, Y. El Miedany, B. Flato, M. Harjacek, H. I. Huppertz, F. Kanakoudi-Tsakalidou, N. Wulffraat, P. Landenne & 17 others J. A. Melo-Gomes, D. Mihaylova, S. Nielsen, I. Nikishina, H. Ozdoqan, K. Pagava, V. Panaviene, A. M. Prieur, A. M. Romicka, I. Rumba, N. Shafaie, G. Susic, S. Takei, Y. Uziel, R. Vesely, P. Woo, A. Martini

Research output: Contribution to journalArticle

21 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)1101-1106
Number of pages6
JournalAnnals of the Rheumatic Diseases
Volume64
Issue number7
DOIs
Publication statusPublished - Jul 2005

Fingerprint

Pediatrics
Rheumatology
Rheumatic Diseases
Websites
Family Health
Child Care
Consensus
Language
Health
Clinical Trials
Physicians
Research

ASJC Scopus subject areas

  • Rheumatology
  • Immunology

Cite this

PRINTO/PRES international website for families of children with rheumatic diseases : www.pediatric-rheumatology.printo.it. / 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.; Landenne, P.; Melo-Gomes, J. A.; Mihaylova, D.; Nielsen, S.; Nikishina, I.; Ozdoqan, 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.

In: Annals of the Rheumatic Diseases, Vol. 64, No. 7, 07.2005, p. 1101-1106.

Research output: Contribution to journalArticle

Ruperto, N, Garcia-Munitis, P, Villa, L, Pesce, M, Aggarwal, A, Fasth, A, Avcin, T, Bae, SC, Balogh, Z, Li, C, De Inocencio, J, Dibra, M, Dolezalova, P, El Miedany, Y, Flato, B, Harjacek, M, Huppertz, HI, Kanakoudi-Tsakalidou, F, Wulffraat, N, Landenne, P, Melo-Gomes, JA, Mihaylova, D, Nielsen, S, Nikishina, I, Ozdoqan, H, Pagava, K, Panaviene, V, Prieur, AM, Romicka, AM, Rumba, I, Shafaie, N, Susic, G, Takei, S, Uziel, Y, Vesely, R, Woo, P & Martini, A 2005, 'PRINTO/PRES international website for families of children with rheumatic diseases: www.pediatric-rheumatology.printo.it', Annals of the Rheumatic Diseases, vol. 64, no. 7, pp. 1101-1106. https://doi.org/10.1136/ard.2004.030221
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. ; Landenne, P. ; Melo-Gomes, J. A. ; Mihaylova, D. ; Nielsen, S. ; Nikishina, I. ; Ozdoqan, 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. / PRINTO/PRES international website for families of children with rheumatic diseases : www.pediatric-rheumatology.printo.it. In: Annals of the Rheumatic Diseases. 2005 ; Vol. 64, No. 7. pp. 1101-1106.
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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.",
author = "N. Ruperto and P. Garcia-Munitis and L. Villa and M. Pesce and A. Aggarwal and A. Fasth and T. Avcin and Bae, {S. C.} and Z. Balogh and C. Li and {De Inocencio}, J. and M. Dibra and P. Dolezalova and {El Miedany}, Y. and B. Flato and M. Harjacek and Huppertz, {H. I.} and F. Kanakoudi-Tsakalidou and N. Wulffraat and P. Landenne and Melo-Gomes, {J. A.} and D. Mihaylova and S. Nielsen and I. Nikishina and H. Ozdoqan and K. Pagava and V. Panaviene and Prieur, {A. M.} and Romicka, {A. M.} and I. Rumba and N. Shafaie and G. Susic and S. Takei and Y. Uziel and R. Vesely and P. Woo and A. Martini",
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T1 - PRINTO/PRES international website for families of children with rheumatic diseases

T2 - www.pediatric-rheumatology.printo.it

AU - Ruperto, N.

AU - Garcia-Munitis, P.

AU - Villa, L.

AU - Pesce, M.

AU - Aggarwal, A.

AU - Fasth, A.

AU - Avcin, T.

AU - Bae, S. C.

AU - Balogh, Z.

AU - Li, C.

AU - De Inocencio, J.

AU - Dibra, M.

AU - Dolezalova, P.

AU - El Miedany, Y.

AU - Flato, B.

AU - Harjacek, M.

AU - Huppertz, H. I.

AU - Kanakoudi-Tsakalidou, F.

AU - Wulffraat, N.

AU - Landenne, P.

AU - Melo-Gomes, J. A.

AU - Mihaylova, D.

AU - Nielsen, S.

AU - Nikishina, I.

AU - Ozdoqan, H.

AU - Pagava, K.

AU - Panaviene, V.

AU - Prieur, A. M.

AU - Romicka, A. M.

AU - Rumba, I.

AU - Shafaie, N.

AU - Susic, G.

AU - Takei, S.

AU - Uziel, Y.

AU - Vesely, R.

AU - Woo, P.

AU - Martini, A.

PY - 2005/7

Y1 - 2005/7

N2 - 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.

AB - 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.

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