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2017 EULAR recommendations for a core data set to support observational research and clinical care in rheumatoid arthritis
H. Radner, K. Chatzidionysiou, E. Nikiphorou, L. Gossec, KL. Hyrich, C. Zabalan, Y. van Eijk-Hustings, PR. Williamson, A. Balanescu, GR. Burmester, L. Carmona, M. Dougados, A. Finckh, G. Haugeberg, ML. Hetland, S. Oliver, D. Porter, K. Raza, P....
Language English Country England, Great Britain
Document type Consensus Development Conference, Journal Article, Research Support, Non-U.S. Gov't
NLK
ProQuest Central
from 1939-01-01 to 6 months ago
Health & Medicine (ProQuest)
from 1939-01-01 to 6 months ago
Family Health Database (ProQuest)
from 1939-01-01 to 6 months ago
ROAD: Directory of Open Access Scholarly Resources
- MeSH
- Consensus MeSH
- Humans MeSH
- Observational Studies as Topic methods standards MeSH
- Arthritis, Rheumatoid * MeSH
- Data Collection methods standards MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Consensus Development Conference MeSH
- Research Support, Non-U.S. Gov't MeSH
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.
Academic Rheumatology Department King's College London London UK
Department of Internal Medicine 3 Division of Rheumatology Medical University Vienna Vienna Austria
Department of Patient and Care Maastricht University Medical Centre Maastricht The Netherlands
Department of Rheumatology and Clinical Immunology Charité University Medicine Berlin Berlin Germany
Department of Rheumatology Bernhoven Uden The Netherlands
Department of Rheumatology North Devon UK
Instituto de Salud Musculoesquelética Instituto de Salud Musculoesquelética Madrid Spain
Patient Partner of Romanian League Against Rheumatism Bucharest Romania
Patient Research Partner Paris France
Rheumatology Department Gartnavel General Hospital Glasgow UK
References provided by Crossref.org
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