Consensus-based recommendations for the management of juvenile systemic sclerosis

Ivan Foeldvari, Roberta Culpo, Francesca Sperotto, Jordi Anton, Tadej Avcin, Eileen Baildam, Christina Boros, Jeffrey Chaitow, Tamas Constantin, Ozgur Kasapcopur, Sheila Knupp Feitosa de Oliveira, Clarissa Pilkington, Natasa Toplak, Annet van Royen, Claudia Saad Magalhaes, Sebastiaan J Vastert, Nico Wulffraat, Francesco Zulian

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Juvenile systemic sclerosis (JSSc) is a rare disease of childhood and currently no international consensus exists with regard to its assessment and treatment. This SHARE (Single Hub and Access point for paediatric Rheumatology in Europe) initiative, based on expert opinion informed by the best available evidence, provides recommendations for the assessment and treatment of patients with JSSc with a view to improving their outcome. Experts focused attention not only on the skin assessment but also on the early signs of internal organ involvement whose proper treatment can significantly affect the long-term outcome. A score for disease severity is proposed in order to perform a structured assessment of outcome over time but a validation in a wider patient population is recommended. Finally, a stepwise treatment approach is proposed in order to unify the standard of care throughout Europe with the aim to reduce morbidity and mortality in this disease.

Original languageEnglish
Pages (from-to)1651-1658
Number of pages8
JournalRheumatology (Oxford, England)
Volume60
Issue number4
Early online date4 Nov 2020
DOIs
Publication statusPublished - 1 Apr 2021

Keywords

  • assessment
  • juvenile systemic sclerosis
  • outcome
  • recommendations
  • scleroderma
  • severity score
  • treatment

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