Helga Radner1, William Dixon2, Kimme Hyrich3, Johan Askling4. 1. Medical University Vienna, Vienna, Austria. 2. Manchester Academic Health Science Centre, University of Manchester, Manchester, UK. 3. NIHR Manchester Musculoskeletal Biomedical Research Unit, Central Manchester NHS Foundation Trust, and Manchester Academic Health Science Centre, Manchester, UK. 4. Karolinska Institute, Stockholm, Sweden.
Abstract
OBJECTIVE: To identify overlaps, discrepancies, and perceived utility of the currently collected data in European clinical rheumatoid arthritis (RA) cohorts and registers. Heterogeneity of data collection and data representation may limit comparative and collaborative RA research. Defining data standards is important and should be informed by which data items are currently collected and their perceived utility in scientific analyses. METHODS: A web survey was sent to 27 European RA registers/clinical cohorts, requesting information on which specific data items were collected, how and with what frequency they were collected, how often data were missing, and if the items collected were regarded as useful for research. RESULTS: Twenty-five of 27 contacted RA cohorts/registers from 16 different European countries, totaling 189,633 patients (range 130-55,000), completed the survey. Items collected by the majority of data sources and used frequently for research were composite disease activity scores, acute-phase reactants, joint counts, information on RA-specific treatments, physical function, and patient global assessment of disease activity. Many of the collected items showed large variability in terms of measurement and time point of collection. Among all items collected, disease activity, RA treatment, and joint counts were regarded as the most important. When not collected, smoking, imaging, and comorbidities were the top-ranked variables felt to have been worth collecting. CONCLUSION: Even though certain items are regularly collected, the mode of data collection and the data definition are heterogeneous. Harmonization of data collection across European clinical RA data sources is therefore pivotal for future collaborative studies.
OBJECTIVE: To identify overlaps, discrepancies, and perceived utility of the currently collected data in European clinical rheumatoid arthritis (RA) cohorts and registers. Heterogeneity of data collection and data representation may limit comparative and collaborative RA research. Defining data standards is important and should be informed by which data items are currently collected and their perceived utility in scientific analyses. METHODS: A web survey was sent to 27 European RA registers/clinical cohorts, requesting information on which specific data items were collected, how and with what frequency they were collected, how often data were missing, and if the items collected were regarded as useful for research. RESULTS: Twenty-five of 27 contacted RA cohorts/registers from 16 different European countries, totaling 189,633 patients (range 130-55,000), completed the survey. Items collected by the majority of data sources and used frequently for research were composite disease activity scores, acute-phase reactants, joint counts, information on RA-specific treatments, physical function, and patient global assessment of disease activity. Many of the collected items showed large variability in terms of measurement and time point of collection. Among all items collected, disease activity, RA treatment, and joint counts were regarded as the most important. When not collected, smoking, imaging, and comorbidities were the top-ranked variables felt to have been worth collecting. CONCLUSION: Even though certain items are regularly collected, the mode of data collection and the data definition are heterogeneous. Harmonization of data collection across European clinical RA data sources is therefore pivotal for future collaborative studies.
Authors: Katerina Chatzidionysiou; Merete Lund Hetland; Thomas Frisell; Daniela Di Giuseppe; Karin Hellgren; Bente Glintborg; Dan Nordström; Kalle Aaltonen; Minna Rk Törmänen; Eirik Klami Kristianslund; Tore K Kvien; Sella A Provan; Bjorn Björn Guðbjörnsson; Lene Dreyer; Lars Erik Kristensen; Tanja Schjødt Jørgensen; Lennart Jacobsson; Johan Askling Journal: RMD Open Date: 2018-04-12
Authors: Lisa Lindner; Anja Weiß; Andreas Reich; Siegfried Kindler; Frank Behrens; Jürgen Braun; Joachim Listing; Georg Schett; Joachim Sieper; Anja Strangfeld; Anne C Regierer Journal: Arthritis Res Ther Date: 2021-07-07 Impact factor: 5.156