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2017 EULAR recommendations for a core data set to support observational research and clinical care in rheumatoid arthritis
  1. Helga Radner1,
  2. Katerina Chatzidionysiou2,3,
  3. Elena Nikiphorou4,
  4. Laure Gossec5,6,
  5. Kimme L Hyrich7,
  6. Condruta Zabalan8,
  7. Yvonne van Eijk-Hustings9,
  8. Paula R Williamson10,
  9. Andra Balanescu11,
  10. Gerd R Burmester12,
  11. Loreto Carmona13,
  12. Maxime Dougados14,
  13. Axel Finckh15,
  14. Glenn Haugeberg16,17,
  15. Merete Lund Hetland18,19,
  16. Susan Oliver20,
  17. Duncan Porter21,
  18. Karim Raza22,23,24,
  19. Patrick Ryan25,26,
  20. Maria Jose Santos27,
  21. Annette van der Helm-van Mil28,29,
  22. Piet van Riel30,
  23. Gabrielle von Krause31,
  24. Jakub Zavada32,33,
  25. William G Dixon34,
  26. Johan Askling2,3
  1. 1 Department of Internal Medicine III, Division of Rheumatology, Medical University Vienna, Vienna, Austria
  2. 2 Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden
  3. 3 Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  4. 4 Academic Rheumatology Department, King’s College London, London, UK
  5. 5 Rheumatology Department, Sorbonne Universités, UPMC University Paris, Paris, France
  6. 6 Department of Rheumatology, AP-HP, Hopital Pitie-Salpetriere, Paris, France
  7. 7 NIHR Manchester Musculoskeletal Biomedical Research Unit, Central Manchester NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK
  8. 8 Patient Partner of Romanian League Against Rheumatism, Bucharest, Romania
  9. 9 Department of Patient and Care, Maastricht University Medical Centre, Maastricht, The Netherlands
  10. 10 Department of Biostatistics, MRC North West Hub for Trials Methodology Research, University of Liverpool, Liverpool, UK
  11. 11 Research Center of Rheumatic Diseases, Research Center of Rheumatic Diseases, ‘Sf. Maria’ Hospital, University of Medicine and Pharmacy ‘Carol Davila’, Bucharest, Romania
  12. 12 Department of Rheumatology and Clinical Immunology, Charité—University Medicine Berlin, Berlin, Germany
  13. 13 Instituto de Salud Musculoesquelética, Instituto de Salud Musculoesquelética, Madrid, Spain
  14. 14 Medicine Faculty, APHP, Rheumatology B Department, Paris Descartes University, Cochin Hospital, Paris, France
  15. 15 Division of Rheumatology, Department of Internal Medicine Specialties, University Hospitals of Geneva, Geneva, Switzerland
  16. 16 Department of Rheumatology, Martina Hansens Hospital, Gjettum, Norway
  17. 17 Norwegian University of Science and Technology, Trondheim, Norway
  18. 18 Center for Rheumatology and Spine Diseases, Centre of Head and Orthopaedics, Copenhagen Center for Arthritis Research, Rigshospitalet, Glostrup, Denmark
  19. 19 Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark
  20. 20 Department of Rheumatology, North Devon, UK
  21. 21 Rheumatology Department, Gartnavel General Hospital, Glasgow, UK
  22. 22 Institute of Inflammation and Ageing, Institute of Inflammation and Ageing, Arthritis Research UK Rheumatoid Arthritis Pathogenesis Centre of Excellence and MRC Arthritis Research UK Centre for Musculoskeletal Ageing Research, University of Birmingham, Birmingham, UK
  23. 23 Biomedical Research Centre, NIHR Birmingham, Birmingham, UK
  24. 24 Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK
  25. 25 Department of Biomedical Informatics, Columbia University, New York, USA
  26. 26 Janssen Research and Development, Janssen, Titusville, USA
  27. 27 Department of Rheumatology, Hospital Garcia de Orta and Instituto de Medicina Molecular da Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal
  28. 28 Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands
  29. 29 Department of Rheumatology, Erasmus Medical Center, Rotterdam, The Netherlands
  30. 30 Department of Rheumatology, Bernhoven, Uden, The Netherlands
  31. 31 Patient Research Partner, Paris, France
  32. 32 Institute of Rheumatology, Institute of Rheumatology, Prague, Czech Republic
  33. 33 Department of Rheumatology, First Faculty of Medicine, Charles University, Prague, Czech Republic
  34. 34 Arthritis Research UK Centre for Epidemiology, Manchester Academic Health Sciences Centre, The University of Manchester, Manchester, UK
  1. Correspondence to Dr Helga Radner, Department of Internal Medicine III, Division of Rheumatology, Medical University Vienna, Vienna 1090, Austria; helga.radner{at}meduniwien.ac.at

Abstract

Personalised medicine, new discoveries and studies on rare exposures or outcomes require large samples that are increasingly difficult for any single investigator to obtain. Collaborative work is limited by heterogeneities, both what is being collected and how it is defined. To develop a core set for data collection in rheumatoid arthritis (RA) research which (1) allows harmonisation of data collection in future observational studies, (2) acts as a common data model against which existing databases can be mapped and (3) serves as a template for standardised data collection in routine clinical practice to support generation of research-quality data. A multistep, international multistakeholder consensus process was carried out involving voting via online surveys and two face-to-face meetings. A core set of 21 items (‘what to collect’) and their instruments (‘how to collect’) was agreed: age, gender, disease duration, diagnosis of RA, body mass index, smoking, swollen/tender joints, patient/evaluator global, pain, quality of life, function, composite scores, acute phase reactants, serology, structural damage, treatment and comorbidities. The core set should facilitate collaborative research, allow for comparisons across studies and harmonise future data from clinical practice via electronic medical record systems.

  • rheumatoid arthritis
  • outcomes research
  • quality indicators
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Footnotes

  • Handling editor Tore K Kvien

  • Contributors All authors listed fulfill authorship criteria. They have contributed to the task force being part of the working group. They have been engaged in the conception of the work, attended meetings and were involved in drafting the manuscript.

  • Funding This project was funded by a EULAR project grant.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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