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Consensus-based recommendations for the management of juvenile localised scleroderma
In 2012, a European initiative called Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile localised scleroderma (JLS) is a rare...
Autores principales: | , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6691928/ https://www.ncbi.nlm.nih.gov/pubmed/30826775 http://dx.doi.org/10.1136/annrheumdis-2018-214697 |
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author | Zulian, Francesco Culpo, Roberta Sperotto, Francesca Anton, Jordi Avcin, Tadej Baildam, Eileen M Boros, Christina Chaitow, Jeffrey Constantin, Tamàs Kasapcopur, Ozgur Knupp Feitosa de Oliveira, Sheila Pilkington, Clarissa A Russo, Ricardo Toplak, Natasa van Royen, Annet Saad Magalhães, Claudia Vastert, Sebastiaan J Wulffraat, Nico M Foeldvari, Ivan |
author_facet | Zulian, Francesco Culpo, Roberta Sperotto, Francesca Anton, Jordi Avcin, Tadej Baildam, Eileen M Boros, Christina Chaitow, Jeffrey Constantin, Tamàs Kasapcopur, Ozgur Knupp Feitosa de Oliveira, Sheila Pilkington, Clarissa A Russo, Ricardo Toplak, Natasa van Royen, Annet Saad Magalhães, Claudia Vastert, Sebastiaan J Wulffraat, Nico M Foeldvari, Ivan |
author_sort | Zulian, Francesco |
collection | PubMed |
description | In 2012, a European initiative called Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile localised scleroderma (JLS) is a rare disease within the group of paediatric rheumatic diseases (PRD) and can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians’ experience. This study aims to provide recommendations for assessment and treatment of JLS. Recommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was formed, mainly from Europe, and consisted of 15 experienced paediatric rheumatologists and two young fellows. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using a nominal group technique. Recommendations were accepted if ≥80% agreement was reached. In total, 1 overarching principle, 10 recommendations on assessment and 6 recommendations on therapy were accepted with ≥80% agreement among experts. Topics covered include assessment of skin and extracutaneous involvement and suggested treatment pathways. The SHARE initiative aims to identify best practices for treatment of patients suffering from PRDs. Within this remit, recommendations for the assessment and treatment of JLS have been formulated by an evidence-informed consensus process to produce a standard of care for patients with JLS throughout Europe. |
format | Online Article Text |
id | pubmed-6691928 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-66919282019-08-26 Consensus-based recommendations for the management of juvenile localised scleroderma Zulian, Francesco Culpo, Roberta Sperotto, Francesca Anton, Jordi Avcin, Tadej Baildam, Eileen M Boros, Christina Chaitow, Jeffrey Constantin, Tamàs Kasapcopur, Ozgur Knupp Feitosa de Oliveira, Sheila Pilkington, Clarissa A Russo, Ricardo Toplak, Natasa van Royen, Annet Saad Magalhães, Claudia Vastert, Sebastiaan J Wulffraat, Nico M Foeldvari, Ivan Ann Rheum Dis Recommendation In 2012, a European initiative called Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile localised scleroderma (JLS) is a rare disease within the group of paediatric rheumatic diseases (PRD) and can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians’ experience. This study aims to provide recommendations for assessment and treatment of JLS. Recommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was formed, mainly from Europe, and consisted of 15 experienced paediatric rheumatologists and two young fellows. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using a nominal group technique. Recommendations were accepted if ≥80% agreement was reached. In total, 1 overarching principle, 10 recommendations on assessment and 6 recommendations on therapy were accepted with ≥80% agreement among experts. Topics covered include assessment of skin and extracutaneous involvement and suggested treatment pathways. The SHARE initiative aims to identify best practices for treatment of patients suffering from PRDs. Within this remit, recommendations for the assessment and treatment of JLS have been formulated by an evidence-informed consensus process to produce a standard of care for patients with JLS throughout Europe. BMJ Publishing Group 2019-08 2019-03-02 /pmc/articles/PMC6691928/ /pubmed/30826775 http://dx.doi.org/10.1136/annrheumdis-2018-214697 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/. |
spellingShingle | Recommendation Zulian, Francesco Culpo, Roberta Sperotto, Francesca Anton, Jordi Avcin, Tadej Baildam, Eileen M Boros, Christina Chaitow, Jeffrey Constantin, Tamàs Kasapcopur, Ozgur Knupp Feitosa de Oliveira, Sheila Pilkington, Clarissa A Russo, Ricardo Toplak, Natasa van Royen, Annet Saad Magalhães, Claudia Vastert, Sebastiaan J Wulffraat, Nico M Foeldvari, Ivan Consensus-based recommendations for the management of juvenile localised scleroderma |
title | Consensus-based recommendations for the management of juvenile localised scleroderma |
title_full | Consensus-based recommendations for the management of juvenile localised scleroderma |
title_fullStr | Consensus-based recommendations for the management of juvenile localised scleroderma |
title_full_unstemmed | Consensus-based recommendations for the management of juvenile localised scleroderma |
title_short | Consensus-based recommendations for the management of juvenile localised scleroderma |
title_sort | consensus-based recommendations for the management of juvenile localised scleroderma |
topic | Recommendation |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6691928/ https://www.ncbi.nlm.nih.gov/pubmed/30826775 http://dx.doi.org/10.1136/annrheumdis-2018-214697 |
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