OBJECTIVES: To provide an overview of the paediatric rheumatology (PR) services in Europe, describe current delivery of care and training, set standards for care, identify unmet needs and inform future specialist service provision. METHODS: An online survey was developed and presented to national coordinating centres of the Paediatric Rheumatology International Trials Organisation (PRINTO) (country survey) and to individual PR centres (centre and disease surveys) as a part of the European Union (EU) Single Hub and Access point for paediatric Rheumatology in Europe project. The survey contained components covering the organization of PR care, composition of teams, education, health care and research facilities and assessment of needs. RESULTS: Response rates were 29/35 (83%) for country surveys and 164/288 (57%) for centre surveys. Across the EU, approximately one paediatric rheumatologist is available per million population. In all EU member states there is good access to specialist care and medications, although biologic drug availability is worse in Eastern European countries. PR education is widely available for physicians but is insufficient for allied health professionals. The ability to participate in clinical trials is generally high. Important gaps were identified, including lack of standardized clinical guidelines/recommendations and insufficient adolescent transition management planning. CONCLUSION: This study provides a comprehensive description of current specialist PR service provision across Europe and did not reveal any major differences between EU member states. Rarity, chronicity and complexity of diseases are major challenges to PR care. Future work should facilitate the development, dissemination and implementation of standards of care, treatment and service recommendations to further improve patient-centred health care across Europe.

2nd Department of Paediatrics Semmelweis University Budapest Hungary

Clinica Pediatrica e Reumatologia and University of Genoa Instituto Giannina Gaslini Genoa Italy

Clinica Pediatrica e Reumatologia PRINTO Coordinating Centre Instituto Giannina Gaslini Genoa Italy

Department for Pediatric Rheumatology Hacettepe University Ankara Turkey

Department of Allergology Rheumatology and Clinical Immunology University of Ljubljana and Children's Hospital University Medical Centre Ljubljana Ljubljana Slovenia

Department of Paediatrics and Adolescent Medicine General University Hospital and 1st Faculty of Medicine Charles University Prague Praha 2 Czech Republic

Department of Pediatric Immunology and Rheumatology Wilhelmina Kinderziekenhuis University Medical Center Utrecht Utrecht Netherlands

Department of Pediatric Rheumatology Hospital Sant Joan de Déu University of Barcelona Barcelona Spain

Department of Pediatrics Division of Pediatric Rheumatology University Hospital Gasthuisberg Leuven Belgium

Department of Rheumatology Alder Hey Children's NHS Foundation Trust Liverpool UK

Department of Rheumatology and Clinical Immunology German Rheumatism Research Centre Berlin Charite University Medicine Berlin Berlin Germany

Department of Woman and Child Health University of Padova Padova Italy

Department of Women's and Children's Health Institute of Translational Medicine University of Liverpool Liverpool UK

Direzione Scientifica Istituto Giannina Gaslini Genoa Italy

Division of Rheumatology Department of Pediatrics University Hospital Tuebingen and Autoinflammation Reference Center Tuebingen Tuebingen Germany

European Network Childhood Arthritis Patient Organisation Jerusalem Israel

Faculty of Medicine University of Latvia Children University Hospital Riga Latvia

French Reference Centre RAISE Paris Descartes University IMAGINE Institute Necker Hospital Assistance Publique Hopitaux de Paris Paris France

Hamburg Centre for Pediatric and Adolescent Rheumatology Hamburg Germany

Infection Immunity and Inflammation University College London Great Ormond St Institute of Child Health London UK

Newcastle University and Great North Children's Hospital Newcastle Hospitals NHS Foundation Trust Newcastle Upon Tyne UK

Pediatric Rheumatology and CEREMAIA Le Kremlin Bicêtre University Hospital APHP Paris Sud University Paris France

Pediatric Rheumatology Helsinki Children's Hospital Helsinki University Central Hospital Finland

Pediatric Rheumatology Unit Karolinska University Hospital Stockholm Sweden

Reference Center for Autoinflammatory Diseases Versailles Hospital CEREMAIA Le Chesnay Paris France

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