title: EULAR recommendations for terminology and research in individuals at risk of rheumatoid arthritis: report from the Study Group for Risk Factors for Rheumatoid Arthritis.
abstract: The Study Group for Risk Factors for Rheumatoid Arthritis was established by the EULAR Standing Committee on Investigative Rheumatology to facilitate research into the preclinical and earliest clinically apparent phases of rheumatoid arthritis (RA). This report describes the recommendation for terminology to be used to define specific subgroups during different phases of disease, and defines the priorities for research in this area. Terminology was discussed by way of a three-stage structured process: A provisional list of descriptors for each of the possible phases preceding the diagnosis of RA were circulated to members of the study group for review and feedback. Anonymised comments from the members on this list were fed back to participants before a 2-day meeting. 18 participants met to discuss these data, agree terminologies and prioritise important research questions. The study group recommended that, in prospective studies, individuals without RA are described as having: genetic risk factors for RA; environmental risk factors for RA; systemic autoimmunity associated with RA; symptoms without clinical arthritis; unclassified arthritis; which may be used in a combinatorial manner. It was recommended that the prefix 'pre-RA with:' could be used before any/any combination of the five points above but only to describe retrospectively a phase that an individual had progressed through once it was known that they have developed RA. An approach to dating disease onset was recommended. In addition, important areas for research were proposed, including research of other tissues in which an adaptive immune response may be initiated, and the identification of additional risk factors and biomarkers for the development of RA, its progression and the development of extra-articular features. These recommendations provide guidance on approaches to describe phases before the development of RA that will facilitate communication between researchers and comparisons between studies. A number of research questions have been defined, requiring new cohorts to be established and new techniques to be developed to image and collect material from different sites.
authors.affiliation: Division of Clinical Immunology and Rheumatology, Academic Medical Center/University of Amsterdam, F4-105 PO Box 22700, 1100 DE Amsterdam, The Netherlands. d.m.gerlag@amc.uva.nl
authors.forename: Danielle M
authors.initials: DM
authors.lastname: Gerlag
authors.forename: Karim
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authors.lastname: Raza
authors.forename: Lisa G M
authors.initials: LG
authors.lastname: van Baarsen
authors.forename: Elisabeth
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authors.lastname: Brouwer
authors.forename: Christopher D
authors.initials: CD
authors.lastname: Buckley
authors.forename: Gerd R
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authors.forename: Cem
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authors.lastname: Gabay
authors.forename: Anca I
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authors.lastname: Catrina
authors.forename: Andrew P
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authors.lastname: Cope
authors.forename: François
authors.initials: F
authors.lastname: Cornelis
authors.forename: Solbritt Rantapää
authors.initials: SR
authors.lastname: Dahlqvist
authors.forename: Paul
authors.initials: P
authors.lastname: Emery
authors.forename: Stephen
authors.initials: S
authors.lastname: Eyre
authors.forename: Axel
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authors.lastname: Finckh
authors.forename: Steffen
authors.initials: S
authors.lastname: Gay
authors.forename: Johanna M
authors.initials: JM
authors.lastname: Hazes
authors.forename: Annette
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authors.lastname: van der Helm-van Mil
authors.forename: Tom W J
authors.initials: TW
authors.lastname: Huizinga
authors.forename: Lars
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authors.lastname: Klareskog
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authors.initials: TK
authors.lastname: Kvien
authors.forename: Cathryn
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authors.lastname: Lewis
authors.forename: Klaus P
authors.initials: KP
authors.lastname: Machold
authors.forename: Johan
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authors.lastname: Rönnelid
authors.forename: Dirkjan
authors.initials: D
authors.lastname: van Schaardenburg
authors.forename: Georg
authors.initials: G
authors.lastname: Schett
authors.forename: Josef S
authors.initials: JS
authors.lastname: Smolen
authors.forename: Sue
authors.initials: S
authors.lastname: Thomas
authors.forename: Jane
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authors.lastname: Worthington
authors.forename: Paul P
authors.initials: PP
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mesh_terms: D001172:Arthritis, Rheumatoid / Q000175:diagnosis* / Q000503:physiopathology; D035843:Biomedical Research; D006801:Humans; D017410:Practice Guidelines as Topic; D009626:Terminology as Topic