Joint Programming Initiative

More Years, Better Lives

The Potential and Challenges of Demographic Change

Swedish Twin Registry
Svenska Tvillingregistret

Topic
Health and Performance
Relevance for this Topic
Country Sweden
URL
More Topics

Governance

Contact information

Department of Medical Epidemiology and Biostatistics
Karolinska Institutet
PO Box 281
171 77 Stockholm
Sweden
Phone: +46 8 524 87418
Fax: +46-8-31 49 75
Email: tvillingregistret(at)ki.se
Url: http://ki.se/ki/jsp/polopoly.jsp?d=9610&l=en

Timeliness, transparency

Depends on the character of data to be supplied.

Type of data


Registry

Type of Study

Longitude survey: long-term study of the same sample

Cross-section, regular

Cohort study


Historical studies of twin populations, bio-med data.

Data gathering method

Face-to-face interview (CAPI, PAPI)

Registries

Self-administered questionnaire


Biomed samples.


Access to data


Available for the scientific community primarily by downloaded files in various applications.

Conditions of access


As the STR is an (inter)national resource, the research team is receptive to collaboration with academic and industry-based researchers. Regardless of the type of research, all potential collaborations or data access agreements must be first reviewed by the Steering Committee of the STR (Swedish Twin Registry). If the applicant is not based at a Swedish university, we require that s/he has a collaborator based at a Swedish university. This is to assure that the Swedish research community benefits from their national resource. After approval by the STR Steering Committee, a contract will be drawn up, and data provided after a payment agreement is arranged.


Varies depending on type of request; between two and four months.


Types of requests for access include: 1. Aggregated summary tables or statistics from the STR. 2. Anonymised files of raw and/or transformed data from the STR. 3. Above data plus linkages to health registries. 4. Access to identifying information for further collection of new data.


The data set is compatible to many applications such as Excel, SAS, SPSS, STATA, Text, etc.


Information is available in Swedish and English.


Coverage


The Swedish Registry was established in the 1960s to study how smoking affects our health. At the time, little was known about the dangers of smoking. There is, at present, information on approximately 85,000 twin pairs, both monozygotic and dizygotic. There are currently about 30 ongoing projects based on the Swedish twin registry. The studies cover a wide range of public health issues, among others a focus on dementia diseases, allergies, cancer and cardiovascular diseases.


Various cohorts 1886, 1926, 1959


Varies for different subsets.


All registered twins in the official statistics.


The whole country


No age restrictions (birth cohorts)


Twins


At present, about 30 ongoing projects based on the twin registry cover a broad spectrum in public health. Some areas being investigated are ageing, dementia, allergies, cancer, and cardiovascular disease. Other projects are about the effects of gender differences on health and life situations. Ongoing projects About 70,000 twins in Sweden born before 1985 have recently responded to questionnaires or interviews. The twins answered questions about diseases they have/had and drugs they use. Now we are analysing the information. To estimate how genes or environment influence different diseases and behavior in childhood, we contact parents to all Swedish twins turning 9- or 12-years-old. More than 6,000 twins' parents have been contacted so far. We continue to interview new parents to the 9 year old. Another exiting project is Dementia in Swedish Twins (HARMONY). It concerns ageing and memory. The aim of this study is to investigate which factors affect our memory capacity and incidence of dementia.


• Andel, R., Crowe, M., Pedersen, N. L., et al. “Physical exercise at midlife and risk of dementia three decades later: A population-based study of Swedish twins.”Journal of Gerontology: Medical Sciences 63A (1) (2008): 62-66. • Bergvall, N., Lindam, A., Pawitan, Y., et al. “Importance of familial factors in associations between offspring birth weight and parental risk of type-2 diabetes.” International Journal of Epidemiology 37 (2008): 185-192. • Bruder, C., Piotrowski, A., Gijsbers, A., et al. “Phenotypically concordant and discordant monozygotic twins display different DNA copy number variation profiles.” The American Journal of Human Genetics 82 (2008): 763-771. • Eriksson, U. K., Gatz, M., Dickman, P., et al. “Asthma, eczema, rhinitis and the risk for dementia.” • Dementia and Geriatric Cognitive Disorders (25) (2008): 148-156. • Hallberg, J., Dominicus, A., Eriksson, U. K., et al. “Interaction between smoking and genetic factors in the development of chronic bronchitis.”Am J Respir Crit Care Med 177 (2008): 486-490. • Nordenstedt, H., Zheng, Z., Cameron, A. J., et al. “Postmenopausal hormone therapy as a risk factor for gastroesophageal reflux symptoms among female twins.” Gastroenterology 134 (2008): 921-928. • Svedberg, P., Johansson, S., Wallander, M.-A., & Pedersen, N. L. “No evidence of sex differences in heritability of Irritable Bowel Syndrome in Swedish twins.”Twin Research and Human Genetics 11(2), (2008): 197-203. • Yuh, J., Neiderhiser, J., Spotts, E., et al. “The role of temperament and social support in depressive symptoms: A twin study of mid-aged women.” Journal of Affective Disorders 106 (2008): 99-105. http://ki.se/ki/jsp/polopoly.jsp?d=9610&l=en


Linkage


ICD


The Twin Registries are subject to rich inter-disciplinary collaborations with scientists both within and outside Sweden.


Data quality


STR has been developed over several years, but the fundamental structure is the same as from start. No major breaks.


High consistency in terminology.


Applicability


Strengths The Swedish Twin Registry, managed by the Karolinska Institute, is the largest of its kind and has become an invaluable resource for medical research. It has a fundamental role for research on health, social bias and living conditions. More information available at: online.wsj.com/.../...yQjAxMTAyMDAwOTEwNDkyWj.html


  • The information about this dataset was compiled by the author:
  • Kenneth Abrahamsson
  • (see Partners)