Background There is considerable variation in the type of information used in rheumatoid arthritis (RA) observational studies. This, in turn, makes collaborative RA observational research challenging. As part of a larger initiative (EULAR Task Force) a step-wise approach was designed in order to achieve a consensus on a standardized minimum core dataset (MCD) with items (i.e. “what to collect”) and instruments (i.e. “how to collect”).
Objectives To undertake a literature review designed to construct a comprehensive list of items and instruments currently collected across observational RA studies in Europe. This will ultimately inform the development of a MCD for collaborative RA research.
Methods A hierarchical literature review of published articles that were I) observational cohorts or registers II) including RA patients and III) were initiated in Europe, was performed. Results were compared and cross-checked with EULAR recommendations for data reporting in RA clinical trials and trial extension studies for management of RA, The EULAR outcome measures library (OML) and the results of an initial survey undertaken by our group1. The latter was a web-survey involving a smaller sample of RA registers and clinical cohorts. The current literature review expanded to involve all existing RA registers and cohorts in published literature. From the literature, information of what is collected (item) and how (instrument) was extracted and the frequency of data collection was calculated.
Results Published articles from 67 different European RA registers and cohorts were included. The number of patients recruited in each register ranged from 130 to more than 50,000. A total of 40 different items were identified comprising >100 different instruments Most studies included a measure of disease duration, disease activity, current DMARD use or physical function although the choice of instrument within each item varied widely in many cases (table 1). For example, 8 different composite scores of disease activity are being captured. Relative agreement on specific items did not always, however, entail agreement in terms of instruments.
Conclusions Information captured in registers is heterogeneous. The frequency of collection of items and instruments informed voting in the first face-to-face meeting, alongside the expert panel survey.
Radner H. el al. Consistency and utility of data items across European rheumatoid arthritis clinical cohorts and registers. Arthritis Care Res 2015
Disclosure of Interest None declared