LifeGene is a national collaborative project designed to build up a resource for research in all medical disciplines, enabling new and groundbreaking research on the relationships among heredity, environment and lifestyle. The study includes studying several hundred thousand Swedes with the aim of creating new tools to prevent, diagnose and treat our most common diseases. LifeGene constitutes a platform for a myriad of biomedical research projects. Researchers not only in biomedicine and biotechnology but also behavioral and social sciences may benefit from access to LifeGene. By combining a biological perspective with e-epidemiology, LifeGene opens up new possibilities for a greater understanding of the interplay between heredity, lifestyle and the environment as regards to our most common diseases.

The Nurses’ Health Study II (NHS II) was established by Dr. Walter Willett and colleagues in 1989 with funding from the National Institutes of Health to study oral contraceptives, diet, and lifestyle risk factors in a population younger than the original NHS cohort.

Why a new cohort of nurses?
This younger generation of nurses included women who started using oral contraceptives during adolescence and were thus maximally exposed during their early reproductive life. Several case-control studies suggesting such exposures might be associated with substantial increases in breast cancer risk provided a particularly strong justification for investment in this large cohort. Researchers also planned to collect detailed information on the types of oral contraceptives used, which was not obtained in the Nurses’ Health Study.

In addition, NHS II obtained information on physical activity and diet in adolescence and early adult life.

The Malaysian Cohort study was initiated in 2005 by the Malaysian government. The top-down approach to this population-based cohort study ensured the allocation of sufficient funding for the project which aimed to recruit 100 000 individuals aged 35–70 years. Participants were recruited from rural and urban areas as well as from various socioeconomic groups. The main objectives of the study were to identify risk factors, to study gene-environment interaction and to discover biomarkers for the early detection of cancers and other diseases. At recruitment, a questionnaire-based interview was conducted, biophysical measurements were performed and biospecimens were collected, processed and stored. Baseline investigations included fasting blood sugar, fasting lipid profile, renal profile and full blood count. Active follow-up and reassessment started in 2013 and to date 35,000 participants have been reassessed including biospecimens.

The Nurses’ Health Study is a longitudinal population study aimed initially to examine the relation between the use of oral contraceptives, cigarette smoking, and risk of major illnesses in women, mainly cancer and cardiovascular diseases. Since then, the study broadened to include the evaluation of health consequences of many lifestyle practices, including diet, physical activity, and specific forms of hormone therapy.

The participants are registered nurses, aged 30 to 55 years and married at the time of recruitment in 1976, and who lived in the 11 most populous states (California, Connecticut, Florida, Maryland, Massachusetts, Michigan, New Jersey, New York, Ohio, Pennsylvania and Texas).

The Scottish Longitudinal Study (SLS) is a large-scale linkage study created using data from administrative and statistical sources. These include: census data from 1991 onwards; vital events data (births, deaths, marriages); NHS Central Register data (gives information on migration into or out of Scotland); and education data (including Schools Census and SQA data).

The Northern Ireland Longitudinal Study (NILS) is a large-scale, representative data-linkage study created by linking data from the Northern Ireland Health Card Registration system to the 1981, 1991, 2001 and 2011 Census returns and to administrative data from other sources. These include vital events registered with the General Register Office for Northern Ireland (such as births, deaths and marriages) and the Health Card registration system migration events data. The result is a 30 year plus longitudinal data set which is regularly being updated. In addition to this rich resource there is also the potential to link further Heath and Social care data in our distinct linkage projects (DLPs).

Selection into the study is based on birth date (day and month): 104 dates throughout the year were selected and if an individual’s date of birth coincided with one of these they were included in the sample. The sample is large – c. 28% of the Northern Ireland population (approximately 500,000 individuals and accounting for approximately 50% of households).

The Northern Ireland Mortality Study (NIMS) is a large-scale data linkage study that links the 1991, 2001 and 2011 Census returns for the whole of the enumerated population (approximately 1.6 million individuals) to subsequently registered mortality data from the General Register Office (GRO). While larger than NILS it is more limited in scope, focusing only on the linkage of mortality data. It allows researchers to focus on more detailed analyses of specific cause of death, some of which may not be possible in NILS because of small numbers in sub-populations and the analysis of less common causes of death (e.g. accidental death). The NIMS dataset is recommended to researchers whose primary interest is in mortality in Northern Ireland. These data are maintained under the same conditions as the NILS and is accessible only under the same constraints.

The CONSTANCES general-purpose cohort is intended to serve as an epidemiological research infrastructure accessible to the epidemiologic research community with a focus on chronic diseases and aging. CONSTANCES is designed as a randomly selected representative sample of French adults aged 18-69 years at inception; 200,000 subjects will be included over a five-year period. At inclusion, the selected subjects are invited to complete questionnaires and to attend a Health Screening Clinic (HSC) for a comprehensive health examination. A biobank will be set up. The follow-up includes a yearly self-administered questionnaire, and a periodic visit to an HSC. Social and health data are collected from the French national databases. Data collected for participants include social and demographic characteristics, socioeconomic status, life events, behaviors, and occupational factors. The health data cover a wide spectrum: self-reported health scales, reported prevalent and incident diseases, long-term chronic diseases and hospitalizations, sick-leaves, handicaps, limitations, disabilities and injuries, healthcare utilization and services provided, and causes of death. To take into account non-participation at inclusion and attrition throughout the longitudinal follow-up, a cohort of non-participants was set up and will be followed through the same national databases as participants.

Last update – 20/06/2017