OBJECTIVES: To evaluate current (inter)national registers and observational cohorts in Europe, and to compare inclusion criteria, aims, collected data, and participation in the European League Against Rheumatism (EULAR) repository. METHOD: We performed a systematic search strategy in six literature databases for rheumatoid arthritis (RA). Publications reporting European (inter)national prospective registers/cohorts including > 200 RA patients with at least half a year of follow-up were selected. RESULTS: In total, 417 articles and abstracts were included from four international databases and 39 national databases/cohorts. International databases were of similar design, frequency of data collection and selection criteria and are mostly initiated to monitor and compare clinical patient care among countries. National databases/cohorts vary in aims and inclusion criteria. Half of the national registers are connected to the EULAR repository of databases. CONCLUSIONS: Our findings indicate that, among researchers, there is little awareness of guidelines to set up registers or cohorts and of the existence of the database collaboration network of EULAR.
OBJECTIVES: To evaluate current (inter)national registers and observational cohorts in Europe, and to compare inclusion criteria, aims, collected data, and participation in the European League Against Rheumatism (EULAR) repository. METHOD: We performed a systematic search strategy in six literature databases for rheumatoid arthritis (RA). Publications reporting European (inter)national prospective registers/cohorts including > 200 RApatients with at least half a year of follow-up were selected. RESULTS: In total, 417 articles and abstracts were included from four international databases and 39 national databases/cohorts. International databases were of similar design, frequency of data collection and selection criteria and are mostly initiated to monitor and compare clinical patient care among countries. National databases/cohorts vary in aims and inclusion criteria. Half of the national registers are connected to the EULAR repository of databases. CONCLUSIONS: Our findings indicate that, among researchers, there is little awareness of guidelines to set up registers or cohorts and of the existence of the database collaboration network of EULAR.
Authors: Valentin Brodszky; Anikó Bíró; Zoltán Szekanecz; Boglárka Soós; Petra Baji; Fanni Rencz; László Tóthfalusi; László Gulácsi; Márta Péntek Journal: Clinicoecon Outcomes Res Date: 2017-02-15