Uppsala Birth Cohort Multigenerational Study (UBCoS Multigen)

Summary

Strengths: The uniqueness of UBCoS Multigen and the originality of the ongoing research stems from this combination of routine registry data (available in Sweden since 1960) with manually collected information stretching back to 1915. In this way, it is possible to follow the first generation of men and women from before birth till age 80-94 years. This makes UBCoS Multigen ideally suited for testing lifecourse models, particularly those connected to 'developmental origins of disease'. UBCoS provides good opportunities of interdisplinary and international collaborations. By the use of Swedish ID – personnumber – it is also possible to link to other datasets. Weaknesses: The data set concerns one city in Sweden, and allows to compare general results with similar registries from other cities.

Type of data

Data Source
Registry

Type of Study
Survey same
Cohort study
Other: The study includes several generations of descendants of the original cohort, i.e. families with children, grandchildren, great-grandchildren etc.

Data gathering method
Registries
Other: Manually abstracted information from hospital records and other archives.

Access to data

Conditions of access
Data can be analysed by CHESS. Guest researchers are welcomed.

Type of available data (e.g. anonymised microdata, aggregated tables, etc.)
The data set has subsets of anonymised micro data for specific analysis (no identifiers).

Formats available
The data set is compatible to most applications as: ASCII, CSV, Excel, SAS, SPSS, STATA, Text, etc.

Coverage

Coverage Years of collection, reference years, and sample sizes
Data was first collected in the 1990s and the sample consisted of 14,192 males and females born in Uppsala University Hospital between 1915 and 1929. In 2004, this original cohort was combined with social and health data on all their descendants, obtained from routine registers (Koupil 2007). In 2007-2011, the data set was further developed by additional data manually collected from church parish records, school archives and records from the 1930 Census and the period of follow-up was extended till the end of 2009/2010. The resulting multigenerational study spans five generations and comprises nearly 140,000 individuals on cohort members, descendants and partners (Koupil & Goodman 2011).

First year of collection
See above. The main cohort was born between 1915 and 1929 and the data collection starts from before their birth (characteristics of parents and families)

Stratification if applicable
Both sexes are included. The original cohort was born in Uppsala (1915-1929) and follow-up continues in the whole country (Sweden).

Base used for sampling

Geographical coverage and breakdowns
Original cohort born in Uppsala, follow-up continues in whole country (Sweden).

Age range
ages 0-96, currently follow-up till end 2011.

Statistical representativeness
Other, please specify

Coverage of main and cross-cutting topics
The cohort is used for a study of social, early life and intergenerational determinants of health and health inequality and is rich in data on social and health characteristics. The uniqueness of UBCoS Multigen, and the originality of the ongoing research, stems from this combination of routine registry data (available in Sweden since 1960) with manually collected social and health data stretching back to early 1900. In this way, it is possible to follow the first generation of men and women from before birth until age 81-95 years, as well as studying health and social mobility across up to six generations (Table 1 and Figure 1). The resulting multigenerational study comprises over 150,000 individuals, including cohort members, parents, descendants and partners (Koupil & Goodman 2011). This large sample size is combined with a low potential for selection bias, given that >98% of the original cohort members were traced to archive and/or register data. Cohort members also appear to be nationally representative in terms of key variables such as infant mortality and lifetime fertility (Goodman et al 2012), indicating the potential to generalize to individuals born in Sweden as a whole. Establishing external validity is also possible through comparisons with available total population data, using data currently accessible at CHESS (Social mobility database) and through the collaboration in the SIMSAM networks.

Linkage

Standardisation
Various classifications can be applied to classify occupational categories. Census and register data used the official Swedish classifications.

Possibility of linkage among databases
Possible through personal numbers to link with relevant background information from other registries or data sets.

Data quality

Entry errors if applicable
The quality of data is subject to the usual problems in completeness and quality of register data. Cleaning and consistency checks completed for a large number of commonly used variables. Triangulation often possible.

Breaks
Changes in diagnostic criteria, completeness of registration etc. due to long period of follow-up.

Consistency of terminology or coding used during collection
E.g. consistent classification for occupational social class, definition of diagnostic categories over various ICD versions etc. developed by the team.

Governance

Contact information
Prof. Dr. Ilona Koupil (PI)
Centre for Health Equity Studies (CHESS), Stockholm University / Karolinska Institute
Sveavägenb 160
10691 Stockholm Sweden Phone: +468163952
Email: ilona.koupil(at)chess.su.se
Url: www.chess.su.se/ubcosmg

Timeliness, transparency
The starting point for the Uppsala Birth Cohort Multigenerational Study (UBCoS Multigen) was a representative and well-defined cohort of 14,192 males and females born in Uppsala University Hospital from 1915-1929 (the Uppsala Birth Cohort Study or UBCoS: Leon 1998). The data collection started in the 1990s and first papers were published in 1998. In 2004, we were able for the first time to combine this original cohort with social and health data on all their descendants, obtained from routine registers (Koupil 2007). In 2007-2011, the dataset was further developed by additional data manually collected from church parish records, school archives and records from the 1930 Census and the period of follow-up was extended till the end of 2009/2010. The resulting multigenerational study spans five generations and comprises nearly 140,000 individuals on cohort members, descendants and partners (Koupil & Goodman 2011). For review of published papers until 2011, please see Koupil (2007) and Koupil & Goodman (2011).