Consensus-based recommendations for the management of juvenile localised scleroderma

Francesco Zulian, Roberta Culpo, Francesca Sperotto, Jordi Anton, Tadej Avcin, Eileen M. Baildam, Christina Boros, Jeffrey Chaitow, T. Constantin, Ozgur Kasapcopur, Sheila Knupp Feitosa De Oliveira, Clarissa A. Pilkington, Ricardo Russo, Natasa Toplak, Annet Van Royen, Claudia Saad Magalhães, Sebastiaan J. Vastert, Nico M. Wulffraat, Ivan Foeldvari

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish
JournalAnnals of the Rheumatic Diseases
DOIs
Publication statusPublished - Jan 1 2019

Fingerprint

Localized Scleroderma
Pediatrics
Rheumatic Diseases
Skin
Therapeutics
Rheumatology
Standard of Care
Rare Diseases
Practice Guidelines
Young Adult
Juvenile-onset scleroderma
Guidelines
Morbidity
Physicians

Keywords

  • DMARDs (biologic)
  • methotrexate
  • systemic sclerosis

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology
  • Biochemistry, Genetics and Molecular Biology(all)

Cite this

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, T.; 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.

In: Annals of the Rheumatic Diseases, 01.01.2019.

Research output: Contribution to journalArticle

Zulian, F, Culpo, R, Sperotto, F, Anton, J, Avcin, T, Baildam, EM, Boros, C, Chaitow, J, Constantin, T, Kasapcopur, O, Knupp Feitosa De Oliveira, S, Pilkington, CA, Russo, R, Toplak, N, Van Royen, A, Saad Magalhães, C, Vastert, SJ, Wulffraat, NM & Foeldvari, I 2019, 'Consensus-based recommendations for the management of juvenile localised scleroderma', Annals of the Rheumatic Diseases. https://doi.org/10.1136/annrheumdis-2018-214697
Zulian, Francesco ; Culpo, Roberta ; Sperotto, Francesca ; Anton, Jordi ; Avcin, Tadej ; Baildam, Eileen M. ; Boros, Christina ; Chaitow, Jeffrey ; Constantin, T. ; 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. In: Annals of the Rheumatic Diseases. 2019.
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