Registers of the Swedish total population and their use in medical research

Abstract

The primary aim of the Swedish national population registration system is to obtain data that (1) reflect the composition, relationship and identities of the Swedish population and (2) can be used as the basis for correct decisions and measures by government and other regulatory authorities. For this purpose, Sweden has established two population registers: (1) The Population Register, maintained by the Swedish National Tax Agency ("Folkbokföringsregistret"); and (2) The Total Population Register (TPR) maintained by the government agency Statistics Sweden ("Registret över totalbefolkningen"). The registers contain data on life events including birth, death, name change, marital status, family relationships and migration within Sweden as well as to and from other countries. Updates are transmitted daily from the Tax Agency to the TPR. In this paper we describe the two population registers and analyse their strengths and weaknesses. Virtually 100 % of births and deaths, 95 % of immigrations and 91 % of emigrations are reported to the Population Registers within 30 days and with a higher proportion over time. The over-coverage of the TPR, which is primarily due to underreported emigration data, has been estimated at up to 0.5 % of the Swedish population. Through the personal identity number, assigned to all residents staying at least 1 year in Sweden, data from the TPR can be used for medical research purposes, including family design studies since each individual can be linked to his or her parents, siblings and offspring. The TPR also allows for identification of general population controls, participants in cohort studies, as well as calculation of follow-up time.

The First Decade with the Swedish Prescribed Drug Register – A Systematic Review of the Output in the Scientific Literature

“…hospital admission and discharge dates, diagnoses and procedures [11], Cause of death register [12], Medical birth register [13], Cancer register [14]). Data retrieved from Statistics Sweden administering civic information including, for example migration [15] and socio-economic characteristics [16], healthcare quality registers focusing on certain conditions or procedures [17] or regional databases with detailed administrative information on healthcare consumption [18] were registered as coming from these sources. As medical records include extensive health information, linkage to this data source was recorded separately [19].…”

Screening for psychiatric morbidity in the population - a comparison of the GHQ-12 and self-reported medication use

“…Many studies originating in Scandinavian and the Nordic countries [20] have previously used hospitalisation rates [21,22], as well as, individual uptake of psychotropic medication to examine a range of factors, including maternal and pre-natal factors related to attention-deficit/hyperactivity disorder in children [23,24], factors related to impaired psychological health in adolescents and younger adults [25], area effects on psychiatric morbidity [26], the effects of working conditions and early retirement [27,28] and the prevalence and differences in poor mental health across refugees and migrants [29]. Medical records have also been used in validity studies of self-reported medication use, with reports of good agreement and specificity being noted between the two measures, especially in chronically used medicines [30].…”

Heritability of End-Stage Renal Disease: A Swedish Adoption Study

“…We used several Swedish nationwide registers as part of our analyses [35-41]. Statistics Sweden and the National Board of Health and Welfare maintain the registers used in the present study.…”