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SP0036 Share recommendations on juvenile dermatomyositis
  1. A Van Royen-Kerkhof
  1. Wilhelmina Children Hospital, Utrecht, Netherlands

Abstract

Background In 2012, a European initiative called Single Hub and Access point for pediatric 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 Dermatomyositis is a rare Pediatric Rheumatic Disease (PRD), associated with significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians' experience. Consequently, treatment regimens differ throughout Europe.

Objectives To provide recommendations for diagnosis and treatment of JDM based on evidence-informed consensus.

Methods Recommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was constituted, consisting of 19 experienced paediatric rheumatologists and 2 experts in paediatric exercise physiology and physical therapy, mainly from Europe. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using nominal group technique. Recommendations were accepted if >80% agreement was reached.

Results In total, 7 overarching principles, 33 recommendations on diagnosis and 19 recommendations on therapy were accepted with >80% agreement among experts. Topics covered include assessment of skin, muscle and major organ involvement and suggested treatment pathways.

Conclusions The SHARE initiative aims to identify best practices for treatment of patients suffering from PRD. Within this remit, recommendations for the diagnosis and treatment of JDM have been formulated by an evidence-informed consensus process to produce a standard of care for patients with JDM throughout Europe.

SHARE – JDM Working Group B. Bader-Meunier (Department for Immunology, Hematology and Pediatric Rheumatology, Necker Hospital, Paris, France), E. Baildam (Alder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool, UK), T. Constantin (Semmelweis Hospital, Budapest, Hungary), B. Feldman (Department of Rheumatology, The Hospital for Sick Children, Toronto, Ontario, Canada.), P. Lahdenne (Department of Pediatric Rheumatology, Children's Hospital, Helsinki University Central Hospital, Helsinki), B. Magnusson (Astrid Lindgren Children's Hospital, Department for Pediatric Rheumatology, Karolinska University HospitalStockholm, Sweden), K. Nistala (Centre for Rheumatology, University College London, UK), C. Pilkington (Centre for Rheumatology, University College London, UK), A. Ravelli (Istituto Giannina Gaslini, Pediatria II, Reumatologia, Paediatric Rheumatology International Trials Organisation (PRINTO) Coordinating Center, Genoa, Italy), R. Russo (Service of Immunology and Rheumatology, Hospital de Pediatría Garrahan, Buenos Aires, Argentina), M. van Brussel (Child Development and Exercise Center, Division of Pediatrics, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands), JJ. van der Net (Child Development and Exercise Center, Division of Pediatrics, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands), L. Wedderburn (Centre for Rheumatology, University College London, UK), N. Wulffraat (Department of Pediatric Immunology, University Medical Centre Utrecht, Utrecht, The Netherlands), B. Bader-Meunier (Department for Immunology, Hematology and Pediatric Rheumatology, Necker Hospital, Paris, France), E. Baildam (Alder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool, UK), T. Constantin (Semmelweis Hospital, Budapest, Hungary), B. Feldman (Department of Rheumatology, The Hospital for Sick Children, Toronto, Ontario, Canada), P. Lahdenne (Department of Pediatric Rheumatology, Children's Hospital, Helsinki University Central Hospital, Helsinki), B. Magnusson (Astrid Lindgren Children's Hospital, Department for Pediatric Rheumatology, Karolinska University HospitalStockholm, Sweden), K. Nistala (Centre for Rheumatology, University College London, UK), C. Pilkington (Centre for Rheumatology, University College London, UK), A. Ravelli (Istituto Giannina Gaslini, Pediatria II, Reumatologia, Paediatric Rheumatology International Trials Organisation (PRINTO) Coordinating Center, Genoa, Italy), R. Russo (Service of Immunology and Rheumatology, Hospital de Pediatría Garrahan, Buenos Aires, Argentina).

Disclosure of Interest None declared

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