Cohort profile: the Swedish National Quality Register for bipolar disorder(BipoläR)

Abstract

Purpose The Swedish National Quality Register for bipolar affective disorder, BipoläR, was established in 2004 to provide nationwide indicators for quality assessment and development in the clinical care of individuals with bipolar spectrum disorder. An ancillary aim was to provide data for bipolar disorder research.Participants Inclusion criteria for registration in BipoläR is a diagnosis of bipolar spectrum disorder (ICD codes: F25.0, F30.1–F30.2, F30.8–F31.9, F34.0) and treatment at an outpatient clinic in Sweden. BipoläR collects data from baseline and annual follow-up visits throughout Sweden. Data is collected using questionnaires administered by healthcare staff. The questions cover sociodemographic, diagnostic, treatment, outcomes and patient reported outcome variables. The register currently includes 39 583 individual patients with a total of 75 423 baseline and follow-up records.Findings to date Data from BipoläR has been used in several peer-reviewed publications. Studies have provided knowledge on effectiveness, side effects and use of pharmacological and psychological treatment in bipolar disorder. In addition, findings on the diagnosis of bipolar disorder, risk factors for attempted and completed suicide and health economics have been reported. The Swedish Bipolar Collection project has contributed to a large number of published studies and provides important information on the genetic architecture of bipolar disorder, the impact of genetic variation on disease characteristics and treatment outcome.Future plans Data collection is ongoing with no fixed end date. Currently, approximately 5000 new registrations are added each year. Cohort data are available via a formalised request procedure from Centre of Registers Västra Götaland (e-mail: [email protected]). Data requests for research purposes require an entity responsible for the research and an ethical approval.