Background Collaborative research is compromised by heterogeneity of data collection in observational rheumatoid arthritis (RA) databases. Therefore a EULAR taskforce has been convened to develop a minimum core dataset (MCD) to 1) harmonize future data collection 2) act as a common data model existing databases can be mapped to 3) serve as a template for standardized data collection for RA research in clinical practice.
Objectives To identify data items (i.e. “what to collect”) and instruments (i.e. “how to collect”) for inclusion in a MCD using an online survey.
Methods First we performed a hierarchical literature review to identify data items and instruments of existing RA cohorts/registers. Extracted data presented in a separate abstract were used to develop an online survey to gather information from an expert panel involving Presidents of National Societies and selected representatives from each European country, patients, rheumatologists, other health professionals, and researchers. Experts were asked to rate importance of 48 different items and their instruments for possible inclusion in a MCD on a scale from 1 (not important) to 9 (very important). For analyses ratings of 1–3 (NO inclusion) and of 7–9 (INCLUSION) were combined and percentages of responses calculated.
Results 90 experts from 28 different European countries (patients 18%, health professionals 18%, physicians 55%, researchers 10%) participated in the survey. 27/48 items were regarded to be important for inclusion in a MCD by >80% of responders. Highest level of agreement to INCLUDE an item was found for: diagnosis of RA, composite scores, tender and swollen joint count (100%; table). Discrepancies of rating were observed for instruments: 24/126 instruments were rated as important for inclusion by >80% of responders.
Conclusions Based on expert ratings the majority of items were considered appropriate for inclusion into a MCD, leading to an extensive template. For most instruments no consensus was achieved. Results of the survey were moved forward onto the next phase of the project.
Disclosure of Interest H. Radner: None declared, E. Nikiphorou: None declared, K. Chatzidionysiou: None declared, L. Gossec: None declared, K. Hyrich: None declared, C. Filip: None declared, Y. van Eijk-Hustings: None declared, P. Williamson: None declared, W. Dixon Grant/research support from: EULAR health professional research grant, J. Askling Grant/research support from: EULAR health professional research grant