EULAR Task Force Recommendations for a Minimum Core Set of Parameters to be Collected in Giant Cell Arteritis Registries and Databases

Lisa Ehlers¹, Johan Askling², Johannes W. J. Bijlsma³, Maria C. Cid⁴, Maurizio Cutolo⁵, Bhaskar Dasgupta⁶, Christian Dejaco^7,8, William G Dixon⁹, Nils Feltelius^10,11, Axel Finckh¹², Kate Gilbert¹³, Sarah Mackie¹⁴, Alfred Mahr¹⁵, Eric L. Matteson¹⁶, Lorna Neill¹⁷, Carlo Salvarani^18,19, Wolfgang A. Schmidt²⁰, Anja Strangfeld²¹, Ronald van Vollenhoven²² and Frank Buttgereit¹, ¹Department of Rheumatology and Clinical Immunology, Charité University Hospital Berlin, Berlin, Germany, ²Unit of Clinical Epidemiology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden, ³Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, Utrecht, Netherlands, ⁴University of Barcelona, Barcelona, Spain, ⁵Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, University of Genova, San Martino Polyclinic Hospital, Genoa, Italy, Genoa, Italy, ⁶Southend University Hospital NHS Foundation Trust, Westcliff-on-Sea, United Kingdom, ⁷Department of Rheumatology and Immunology, Medical University Graz, Graz, Austria, Graz, Austria, ⁸Rheumatology, Hospital of Bruneck, Bruneck, Italy, ⁹Arthritis Research UK Centre for Epidemiology, The University of Manchester, Manchester, United Kingdom, ¹⁰Medical Products Agency, Uppsala, Sweden, ¹¹Cross-Committee Task Force on Registries at the European Medicines Agency, London, United Kingdom, ¹²University Hospital of Geneva, Geneva, Switzerland, ¹³Patient Representative from PMRGCAuk, London, United Kingdom, ¹⁴NIHR-Leeds Musculoskeletal Biomedical Research Unit and Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, University of Leeds, Leeds, United Kingdom, ¹⁵Internal Medicine, Saint-Louis Hospital, Paris Diderot University, Paris, France, ¹⁶Division of Rheumatology, Mayo Clinic College of Medicine and Science, Rochester, MN, ¹⁷Patient Representative from PMR-GCA Scotland, Perth, United Kingdom, ¹⁸Università di Modena e Reggio Emilia, Modena, Italy, ¹⁹Azienda USL-IRCCS di Reggio Emilia and Università di Modena e Reggio Emilia, Reggio Emilia, Italy, ²⁰Medical Center for Rheumatology and Clinical Immunology Berlin-Buch, Immanuel Krankenhaus Berlin, Berlin, Germany, ²¹Epidemiology, German Rheumatism Research Center, Berlin, Germany, ²²Amsterdam Rheumatology and Immunology Center ARC, Amsterdam, Netherlands

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: Adverse events, giant cell arteritis, Outcome measures, polymyalgia rheumatica and registries

Session Information

Date: Tuesday, October 23, 2018

Title: Vasculitis Poster III: Immunosuppressive Therapy in Giant Cell Arteritis and Polymyalgia Rheumatica

Session Type: ACR Poster Session C

Session Time: 9:00AM-11:00AM

Background/Purpose: Giant cell arteritis (GCA) represents the most common form of primary systemic vasculitis, and is frequently associated with comorbidities related either to the disease itself or induced by its treatment. Systematically collected data on disease course, treatment and outcomes of GCA remain scarce.

This EULAR Task Force therefore established a core set of data items which can easily be collected by clinicians, in order to facilitate collaborative research into the course and outcomes of GCA.

Methods: A multidisciplinary EULAR task force group of 20 experts including rheumatologists, internists, epidemiologists and patient representatives was assembled. A compilation of items describing GCA status and disease course was compiled to be discussed by three breakout groups during a one-day meeting. The results were presented to all members of the task force and further discussed. Final consensus was achieved by means of several rounds of email discussions after the meeting.

Results: Out of the original compilation, 95 parameters were considered relevant. Potential items were subdivided into the following categories: General, demographics, GCA-related signs and symptoms, other medical conditions, and treatment. Suitable instruments and assessment intervals were proposed for documentation of each item. In the next round of discussions the selection was reduced to a minimum core set of 70 parameters to facilitate implementation of the recommendations in both clinical care and clinical research. The following table represents an excerpt of the set of selected items. This is still a tentative listing since the final voting process on the choice of items is currently ongoing.

Conclusion: The recommended core set of parameters is intended to guarantee comparability of relevant items from different GCA registries and databases for the dual purposes of facilitating clinical research and improving clinical care.

Disclosure: L. Ehlers, None; J. Askling, AbbVie Inc., BMS, MSD, Pfizer, Roche, Astra-Zeneca, Eli Lilly, Samsung Bioepis, UCB, 9,Pfizer, Eli Lilly, 5; J. W. J. Bijlsma, Roche, SUN, 5; M. C. Cid, Roche, 5; M. Cutolo, Mundipharma, Horizon, 5; B. Dasgupta, Roche, Servier, GSK, Mundipharma, Pfizer, Merck, Sobi, UCB, 5,Napp, Roche, 2; C. Dejaco, MSD, Pfizer, UCB, Abbie, Roche, Novartis, Lilly, Celgene, Merck, Sandoz, GSK, 5,Pfizer, MSD, 2; W. G. Dixon, Bayer, 5; N. Feltelius, Swedish Medical Products agency MPA, 3; A. Finckh, Abbie, AB2BIO, BMS, Eli-Lilly, MSD, Pfizer, Roche, 5; K. Gilbert, PMRGCAuk, 5; S. Mackie, Roche, GSK, Sanofi, Chugai, 5,PMRGCAuk, PMR and GCA North East patient support group, 6; A. Mahr, Roche-Chugai, 5; E. L. Matteson, Novartis, GSK, Endocyte, BMS, Hoffman-La Roche, Genentech, 5,UpToDate, Paradigm, 9; L. Neill, PMR-GCA Scotland, 6; C. Salvarani, Roche, 5; W. A. Schmidt, Roche, GSK, Sanofi, 5; A. Strangfeld, AbbVie, BMS, Lilly, MSD, Pfizer, Roche, Sanofi-Aventis, UCB, 5; R. van Vollenhoven, AbbVie, BMS, GSK, Pfizer, UCB, 2,AbbVie, AstraZeneca, Biotest, BMS, Celgene, Crescendo, GSK, Janssen, Lilly, Merck, Novartis, Roche, UCB, 5; F. Buttgereit, Horizon, Mundipharma, Roche, Galapagos, 5.

To cite this abstract in AMA style:

Ehlers L, Askling J, Bijlsma JWJ, Cid MC, Cutolo M, Dasgupta B, Dejaco C, Dixon WG, Feltelius N, Finckh A, Gilbert K, Mackie S, Mahr A, Matteson EL, Neill L, Salvarani C, Schmidt WA, Strangfeld A, van Vollenhoven R, Buttgereit F. EULAR Task Force Recommendations for a Minimum Core Set of Parameters to be Collected in Giant Cell Arteritis Registries and Databases [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/eular-task-force-recommendations-for-a-minimum-core-set-of-parameters-to-be-collected-in-giant-cell-arteritis-registries-and-databases/. Accessed .

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