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

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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.

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Abbreviations

PIN:

Personal identity number

PR:

Population Register

PR-Tax:

Population Register (maintained by the Swedish Tax Agency)

TPR:

Swedish Total Population Register (maintained by Statistics Sweden)

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Acknowledgments

Jonas F. Ludvigsson would like to dedicate this paper to Ingvar Johannesson, former civil servant at Statistics Sweden, neighbour and friend. Johannesson authored the report Total Population Register 2002 BEO1O2. Ludvigsson would also like to acknowledge the help of secretary Angelica Netterhall, Karin Wegfors (Statistics Sweden), Jesper Brodin (Statistics Sweden) and Gunnilla Autio (Swedish Tax Agency). We acknowledge financial support from the Swedish Research Council through the Swedish Initiative for Research on Microdata in the Social And Medical Sciences (SIMSAM) framework Grant No. 340-2013-5867.

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Authors and Affiliations

  1. Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, 17177, Stockholm, Sweden

    Jonas F. Ludvigsson, Catarina Almqvist & Weimin Ye

  2. Department of Paediatrics, Örebro University Hospital, Örebro, Sweden

    Jonas F. Ludvigsson

  3. Division of Epidemiology and Public Health, School of Medicine, University of Nottingham, Nottingham, UK

    Jonas F. Ludvigsson

  4. Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden

    Catarina Almqvist

  5. Clinical Epidemiology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden

    Anna-Karin Edstedt Bonamy, Martin Neovius & Olof Stephansson

  6. Unit of Epidemiology, Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden

    Rickard Ljung

  7. Department of Surgical Sciences, Uppsala University, Uppsala, Sweden

    Karl Michaëlsson

  8. Department of Women’s and Children’s Health, Karolinska Institutet and Hospital, Stockholm, Sweden

    Anna-Karin Edstedt Bonamy & Olof Stephansson

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  1. Jonas F. Ludvigsson
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Correspondence to Jonas F. Ludvigsson.

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Ludvigsson, J.F., Almqvist, C., Bonamy, AK.E. et al. Registers of the Swedish total population and their use in medical research. Eur J Epidemiol 31, 125–136 (2016). https://doi.org/10.1007/s10654-016-0117-y

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