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.
Recruitment Period: 2004
Sample size at start or planned sample size if still recruiting: 16,122 (15,770 households included at Sweep 1; 352 ethnic boost interviews added at Sweep 4)
Estimated current sample size: 15,629
Age at recruitment: 13-14
Next Steps (previously known as the Longitudinal Study of Young People in England – LSYPE) is a major innovative cohort study of young people. The study began in 2004 and included all young people in Year 9, aged between 13 and 14, who attended state and independent schools in England.
Next Steps is one of the main information sources for the formation and appraisal of policies relating to young people and will continue to be so for at least the next 10 years. The baseline data will be used to monitor the progress of the cohort group, evaluate the success of policies aimed at this group and provide an evidence base for further policy development. The study brings together data from a wide range of sources and reflects the variety of influences on learning and progression.
Following the initial survey at age 13-14, the cohort members were visited every year until 2010, when they were age 19-20. Young people were interviewed along with their parents up to sweep 4 (age 17).
The most recent survey took place in 2015/16, when the cohort members were 25 years old. It maintained the strong focus on education, but the content was broadened to become a more multi-disciplinary research resource. Data was collected about cohort members’ housing and family life, employment and economic circumstances, education and job training, physical and emotional health, and identity and participation. A wide range of administrative data linkage consents were collected in the domains of health, education, economics and criminal behaviour.
The Andhra Pradesh Children and Parent Study (APCAPS) is a large prospective, intergenerational cohort study in Southern India that began with the long-term follow-up of the Hyderabad Nutrition Trial (1987-1990). It is situated in 29 villages near the city of Hyderabad in Ranga Reddy district, Andhra Pradesh.
The Hyderabad Nutrition Trial evaluated the Integrated Child Development Services (ICDS) scheme, a national community outreach program, which provides a daily food supplement to pregnant women and children under 6 years of age. The trial used a controlled stepped wedge design, recruiting pregnant women from 29 villages (15 intervention with program; 14 controls awaiting implementation) and followed them through to childbirth.
In 2003-5, trial households were retraced and surveyed: families with at least one child born during the trial period and still alive in 2003-05 became the APCAPS prospective cohort (1815 families, 2601 index children). At this time, a first wave (W1) of data collection was carried out on index children and their mothers. The index children were then re-examined as young adults (aged 18-23 years) in 2009-10 (the second wave, W2) and then again in 2010-12 (the third wave, W3) when their siblings and parents were also examined. A socio-demographic household survey of all residents in all 29 villages was completed between 2012 and 2014.
A family-based cohort study that is embedded in the Genetic Research in Isolated Populations (GRIP) program in the South West of the Netherlands. The aim of this program was to identify genetic risk factors in the development of complex disorders. For the ERF study, 22 families that had at least five children baptized in the community church between 1850-1900 were identified with the help of genealogical records. All living descendants of these couples and their spouses were invited to take part in the study. Data collection started in June 2002 and was finished in February 2005 (n=2065).
The primary objective of the Jackson Heart Study is to investigate the causes of cardiovascular disease (CVD) in African Americans to learn how to best prevent this group of diseases in the future.
Specific objectives include:
Identification of factors, which influence the development, and worsening of CVD in African Americans, with an emphasis on manifestations related to high blood pressure (such as remodeling of the left ventricle of the heart, coronary artery disease, heart failure, stroke, and disorders affecting the blood vessels of the kidney).
Building research capabilities in minority institutions at the undergraduate and graduate level by developing partnerships between minority and majority institutions and enhancing participation of minority investigators in large-scale epidemiologic studies.
Attracting minority students to and preparing them for careers in health sciences.
The Jackson Heart Study conducted three cohort examinations, an initial clinic examination from 2000 to 2004 (Exam1), followed by a second exam from 2005 to 2008 (Exam 2) and a final exam in 2009 to 2013 (Exam 3). Starting in 2001, participants have been contacted annually, and ascertainment of hospitalizations for cardiovascular events and deaths is ongoing.
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 NLSY 1979 Cohort is a longitudinal project that follows the lives of 12,686 American youth born between 1957 and 1964. The study was intended to be representative of United States residents, both male and female. It observes the life-course experiences of young adults who were finishing their schooling and were making decisions about education and training, entering the labour market, military service, marriage, and having families. Cohort members are now in their 50s and survey content has turned to age-appropriate topics including health and retirement expectations.
Yearly personal interviews were conducted from 1979 – 1986. In 1987, a telephone interview was conducted. Personal interviews resumed in 1988 and continued yearly until 1994. Since 1994, NLSY79 participants have been interviewed in even-numbered years.
The original study (1969-73) had five main objectives: (i) to study the relationship of birth weight (BW) and gestational age (GA) to infant mortality and the incidence of congenital defects; (ii) to study maternal blood pressure before and during pregnancy and the incidence of toxaemia; (iii) to assess the effects of parental consanguinity on reproductive outcomes; (iv) to examine the impact of family planning programmes on fertility and (v) to estimate rates of foetal loss, and neonatal, infant and early childhood mortality.1 The subsequent follow-up studies focused on the effects of prenatal factors BW and GA on physical growth and development and mortality during childhood and adolescence.
For the follow-up in young adulthood (1998-2002), the main objective was to study glucose tolerance, insulin resistance and insulin secretion and a range of cardiovascular risk factors (body composition, blood pressure and plasma lipid concentrations) in relation to parental size, neonatal size and childhood growth.
The Prospective Epidemiological Risk Factor (PERF) Study is an ambidirectional population-based study of postmenopausal women set up with the purpose of obtaining a better understanding of the aetiology and pathogenesis of age-related diseases. Participants were recruited from a source population of 8875 women residing in Denmark. The baseline examination (PERF I) comprised 5855 women with mean age of 70.8 years (49.7-88.8) and took place between 1999 and 2001. All subjects have been followed up with registry linkage using population-based national registries. Further, a subcohort was re-invited to attend a follow-up visit between 2013 and 2014 (PERF II). Registry data are available for all baseline participants. From the baseline population, 2103 were enrolled in PERF II.
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).