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SAT0535 (2018)
Eular 2018 core set of data to be collected in giant cell arteritis registries and databases viewpoints from a eular task force
L. Ehlers1, J. Askling2, J.W. Bijlsma3, M.C. Cid4, M. Cutolo5, B. Dasgupta6, C. Dejaco7,8, W.G. Dixon9, N. Feltelius10,11, A. Finckh12, K. Gilbert13, S. Mackie14, A. Mahr15, E.L. Matteson16, L. Neill17, C. Salvarani18, W.A. Schmidt19, A. Strangfeld20, R. van Vollenhoven21, F. Buttgereit1
1Department of Rheumatology and Clinical Immunology, Charité University Hospital, Berlin, Germany
2Department of Medicine, Karolinska Institutet, Stockholm, Sweden
3Department of Rheumatology and Clinical Immunology, University Medical Centre Utrecht, Utrecht, Netherlands
4Department of Autoimmune Diseases, Hospital Clinic, University of Barcelona, Institut d’Investigacions Biomèdiques August Pi I Sunyer, Barcelona, Spain
5Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, University of Genoa, Genoa, Italy
6Southend University Hospital NHS Foundation Trust, Westcliff-on-Sea, Essex, UK
7Department of Rheumatology, Medical University of Graz, Graz, Austria
8Rheumatology Service, Hospital of Bruneck, South Tyrol Health Trust, Bruneck, Italy
9Arthritis Research UK Centre for Epidemiology, Centre for Musculoskeletal Research, Institute of Inflammation and Repair, University of Manchester, Manchester, UK
10Medical Products Agency, Uppsala, Sweden
11Cross-Committee Task Force on Registries, European Medicines Agency, London, UK
12Division of Rheumatology, Geneva University Hospital, Geneva, Switzerland
13Patient Representative from PMRGCAuk, London
14NIHR-Leeds Musculoskeletal Biomedical Research Unit and Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK
15Department of Internal Medicine, Hospital Saint-Louis, University Paris 7 – Diderot, Paris, France
16Division of Rheumatology and Department of Health Sciences Research, Mayo Clinic College of Medicine, Rochester, MN, USA
17Patient Representative from PMR-GCA Scotland, Perth, UK
18Division of Internal Medicine, Azienda Ospedaliera-Istituto di Ricovero e Cura a Carattere Scientifico di Reggio Emilia, Reggio Emilia, Italy
19Immanuel Krankenhaus Berlin: Medical Center for Rheumatology Berlin-Buch
20Epidemiology Unit, German rheumatism research Centre, DRFZ, Berlin, Berlin, Germany
21Amsterdam Rheumatology and Immunology Center (ACR), Amsterdam, Netherlands

 

Background: Giant cell arteritis (GCA) represents the most common form of primary vasculitis and can be associated with severe and potentially life-threatening complications. Due to its low prevalence, systematically collected data on course and outcome of this disease are scarce.

Objectives: The aim of this EULAR Task Force was to identify a core set of data items which can easily be collected from clinicians and facilitates examination of disease course and outcome.

Methods: A multidisciplinary EULAR task force group of 20 experts including rheumatologists, epidemiologists and patient representatives was assembled and breakout groups formed for a meeting at which items from a previously compiled collection of core parameters for a GCA registry were evaluated. Results were presented to the other group members following a structured process for discussion and consensus finding. The meeting was followed by several rounds of discussions to achieve consensus.

Results: A total of 95 items were identified, subdivided into the following categories: General, Demographics, GCA-related signs and symptoms, Other medical conditions, and Treatment. Suitable instruments and assessment intervals were determined for documentation of each item. To facilitate implementation of the recommendations in both primary care and scientifically oriented registers, a minimum core set of parameters was distilled, with supplemental items that can be added optionally depending on the designated purpose of individual registers.

Abstract SAT0535 – Table 1 A minimum core set of parameters to be collected in giant cell arteritis registries and databases

abs_ZRQQRQZZ_F001.jpg

Conclusions: This core set intends to ensure that data from different GCA registries and databases can be compared for the dual purposes of clinical research and improving clinical care, thereby facilitating collaborative analyses.

Disclosure of Interest: L. Ehlers: None declared, J. Askling Grant/research support from: Abbvie, BMS, MSD, Pfizer, Roche, Astra-Zeneca, Eli Lilly, Samsung Bioepis, UCB, J. Bijlsma Consultant for: Roche, SUN, M. Cid Consultant for: Roche, M. Cutolo Consultant for: Mundipharma, Horizon, B. Dasgupta Grant/research support from: Napp, Roche, Consultant for: Roche, Servier, GSK, Mundipharma, Pfizer, Merck, Sobi, Speakers bureau: UCB, Merck, C. Dejaco Grant/research support from: Pfizer, MSD, Consultant for: MSD, Pfizer, UCB, AbbVie, Roche, Novartis, Lilly, Celgene, Merck, Sandoz, GSK, W. Dixon Consultant for: Bayer, N. Feltelius Employee of: Swedish Medical Products Agency, A. Finckh Consultant for: AbbVie, AB2BIO, BMS, Eli-Lilly, MSD, Pfizer, Roche, K. Gilbert Consultant for: PMRGCAuk, S. Mackie Grant/research support from: Roche, GSK, Consultant for: Roche, Sanofi, Chugai, PMRGCAuk, A. Mahr Consultant for: Roche-Chugai, E. Matteson Grant/research support from: Novartis, Bristol Meyer Squibb, Hoffman-La Roche, Genentech, Consultant for: Glaxo-Smith-Kline, Endocyte, L. Neill Consultant for: PMR-GCA Scotland, C. Salvarani Consultant for: Roche, W. Schmidt Consultant for: Roche, GlaxoSmithKline, Sanofi, A. Strangfeld Speakers bureau: AbbVie, BMS, Lilly, MSD, Pfizer, Roche, Sanofi-Aventis, UCB, R. van Vollenhoven Grant/research support from: AbbVie, BMS, GSK, Pfizer, and UCB, Consultant for: AbbVie, AstraZeneca, Biotest, BMS, Celgene, Crescendo, GSK, Janssen, Lilly, Merck, Novartis, Pfizer, Roche, and UCB, F. Buttgereit Grant/research support from: Horizon Pharma, Consultant for: Horizon Pharma, Mundipharma, Roche, Galapagos

DOI: 10.1136/annrheumdis-2018-eular.2428


Citation: Ann Rheum Dis, volume 77, supplement Suppl, year 2018, page A1122
Session: Vasculitis