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The Swedish Twin Registry, a Research Database, in the Era of New Swedish Legislation

Published online by Cambridge University Press:  25 May 2026

Ulrika Zagai*
Affiliation:
Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Sweden
Paul Lichtenstein
Affiliation:
Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Sweden
Robert Karlsson
Affiliation:
Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Sweden
Nancy L Pedersen
Affiliation:
Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Sweden
Patrik KE Magnusson
Affiliation:
Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Sweden
*
Corresponding author: Ulrika Zagai; Email: ulrika.zagai@ki.se

Abstract

The Swedish Twin Registry (STR), established in the late 1950s, is one of the world’s most comprehensive twin registries and a cornerstone for research on genetic and environmental determinants of health. STR includes data on Swedish-born twins since 1886, complemented by longitudinal questionnaires, clinical measures, and biobank samples. In 2019, STR became a national research infrastructure with a mission to provide broader data sharing, while in 2025, STR further transitioned into a legally defined role as a ‘certain research database’ under the new Swedish Act on Certain Research Databases. The new legislation provides a framework for collecting and storing personal data with broad consent for future research projects, without requiring ethical approval for the data collection per se. Instead, ethical review is conducted separately for each research project seeking to use STR data. This article aims to describe STR’s current role, governance, and legal context, highlighting implications for data access and biobank integration. The registry currently holds data on more than 160,000 twins, with ongoing ascertainment at 9 months and 9 years with follow-ups at ages 15, 18, and 24. Annual linkages to national health registers enrich longitudinal analyses of disease outcomes. A variable search engine is openly available via STR’s web portal while higher level metadata is provided through Swedish research data services. STR’s evolution illustrates both opportunities and challenges in balancing open science practices, legal compliance, and participant integrity within large-scale research infrastructures.

Information

Type
Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2026. Published by Cambridge University Press on behalf of International Society for Twin Studies
Figure 0

Figure 1. Data collection activities are done within the legal framework of STR as a certain research database (light blue dotted frame). Data are used by researchers in specified research projects that are approved by the STR expert committee and have Swedish ethical approval (orange dotted frame). Projects may generate new data of general value for secondary use. The policy states (in the contract with the researcher) that such data should be fed back to the STR database. The conditions for when this approach is applicable depend on both scientific value (STR expert committee assesses) as well as ethical and legal considerations.

Figure 1

Table 1. Key milestones in the development of the Swedish Twin Registry (STR)

Figure 2

Figure 2. Numbers of participating twins (blue) by birth cohort and corresponding number of twins with GWAS data available (orange).

Figure 3

Figure 3. Participation rate by birth year in the CATSS and NewTwin studies. CATSS9: telephone interviews conducted during 2004–2019; CATSS9w: web questionnaires conducted during 2020–2024; NewTwin: web questionnaires conducted during 2021–2024. The birth-year 2011 is missing since that year involved the transition with a mixture between telephone interview and web questionnaires, 2016–2020 are missing since these birth years are yet to be contacted.

Figure 4

Figure 4. Longitudinal participation in CATSS follow-ups among twins born 1994–2000 who all were contacted for the first time in CATSS9. The bars show the number of participants at each assessment wave: telephone interview at age 9 years (CATSS9; guardians only) and web-based questionnaires at ages 15 and 18 years (CATSS15, CATSS18; guardians and/or twins) and age 24 years (CATSS24; twins). The color-coding indicates at which wave the twins chose to participate for the first time.

Figure 5

Table 2. Questionnaires available for subscriptions and current research topics with ongoing subscriptions