DANBIO-powerful research database and electronic patient record

The nationwide DANBIO registry has been designed to capture operational clinical data as part of routine clinical care. At the same time, it provides a powerful research database. This article reviews the DANBIO registry with focus on problems and solutions of design, funding and linkage, provides an overview of the research outcome and presents the cohorts of RA patients. The registry, which is approved as a national quality registry, includes patients with RA, PsA and AS, who are followed longitudinally. Data are captured electronically from the source (patients and health personnel). The IT platform is based on open-source software. Via a unique personal identification code, linkage with various national registers is possible for research purposes. Since the year 2000, more than 10,000 patients have been included. The main focus of research has been on treatment efficacy and drug survival. Compared with RA patients, who were on conventional treatment with DMARDs, the patients who started biological treatment were younger, had longer disease duration, higher disease activity, tried more DMARDs and received more prednisolone. Also, more patients on biological therapy were seropositive and had erosive disease. However, the current levels of disease activities and the fraction of patients who had gone into remission in the two groups of patients were very similar. This indicates that clinicians have a common treatment goal for RA patients regardless of treatment. In conclusion, DANBIO serves as an electronic patient 'chronicle' in routine care, and at the same time provides a powerful research database.