Cohorts for Life Course Research

There are many data resources that have collected longitudinal measures throughout sensitive periods of growth and development applicable to life course research. The following resources are open (through mechanisms noted) to public collaboration and highlight a variety of research areas.

Danish National Birth Cohort

• General Description: The aim is to investigate exposures in the period from conception to early childhood. Sub-studies examine autism and cerebral palsy.
• Sample Size: 100,000 pregnant women and offspring; age 11 year follow up has been completed.
• Biologic Samples/Measures: Blood taken from the mother twice during pregnancy and blood from the umbilical cord taken shortly after birth.
• Accessibility: All researchers with a project that falls within the overall aim of the DNBC may apply for data. The price for your dataset will depend on the time our data managers spend on assisting you and constructing your dataset. Usually, the price will be around DKK 10 - 15,000. The connection to the server including storage space costs DKK 5,000 a year.
• Accessibility link

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The Norwegian Mother and Child Cohort Study (MoBa)

• General Description: A study of the causes of disease among mothers and children. Unique focus on maternal eating disorders and related behaviors and offspring nutrition.
• Sample Size: 100,000 pregnant women and offspring; age 8 year follow up has been completed.
• Biologic Samples/Measures: Blood samples from week 17 of pregnancy.
• Accessibility: All researchers who want to access MoBa data must obtain a project specific approval from the Regional Committees for Medical and Health Research Ethics (REC-approval) before questionnaire data can be released.
• Accessibility link

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Medical Research Council (MRC) National Survey of Health and Development

• General Description: A longitudinal cohort from birth through the life span to understand better how factors acting across the whole of life can affect the chance of living a long, healthy and independent life.
• Sample Size: 5,362 births now ages from 1946; ages 60-64 year follow up are completed.
• Biologic Samples/Measures: Multiple time points of fasting blood, saliva, urine, cardiac echo, blood pressure.
• Accessibility: Facilitated collaborations with the scientific and data collection teams by bona fide scientists are welcome; they are encouraged to become principal or co-investigators on grants to raise additional funding for new research projects based on the new data or samples.
• Accessibility link 

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The Lothian Birth Cohorts of 1921 and 1936

• General Description: The Lothian Birth Cohorts of 1921 and 1936 are follow-up studies of the Scottish Mental Surveys of 1932 and 1947. The Lothian Birth Cohort 1921 (LBC1921) was begun in 1999 with the original aim of discovering genetic determinants of cognitive aging. The Lothian Birth Cohort 1936 (LBC1936) was begun in 2004 with the aim of discovering a wider range of causes of people's differences in cognitive aging. Recruitment began at age 70.
• Sample Size: Lothian Birth Cohort of 1921 (n=554); Lothian Birth Cohort 10=936 (n=1,091). Cognitive measures were taken when individuals were 11 years of age. Follow up occurred when individuals were approximately 79 years of age and has continued through at least age 90 when possible.
• Biologic Samples/Measures: Retinal photography, facial and body measure images, serum samples.
• Accessibility: The current procedure for those who wish to work with the data is initially to email Ian Deary to ask for an "LBC Data Request Form." Both LBC studies have clear data dictionaries which help researchers to discern whether the variables they wish to use are present.
• Accessibility link: Inquiries should be made to i.deary@ed.ac.uk.

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The National Longitudinal Study of Adolescent to Adult Health (Add Health)

• General Description: Add Health is a longitudinal study of a nationally representative sample of adolescents in grades 7-12 in the United States during the 1994-95 school year. The Add Health cohort has been followed into young adulthood with four in-home interviews, the most recent in 2008, when the sample was aged 24-32. Add Health is re-interviewing cohort members in a Wave V follow-up from 2016-2018 to collect social, environmental, behavioral, and biological data with which to track the emergence of chronic disease as the cohort moves through their fourth decade of life.
• Sample Size: The public-use dataset for Wave I contains information collected in 1994–95 from Add Health’s nationally representative sample of adolescents. The total number of Wave I respondents in this dataset is 6,504. Wave IV was designed to study the developmental and health trajectories across the life course of adolescence into young adulthood. The Wave IV public-use file contains data on 5,114 respondents, aged 24 to 32.
• Biologic Samples/Measures: Urinalysis, HPV assays, select genotype values, serum with assays of flucose, CRP, EBV, and lipids.
• Accessibility: Public-use data are available from four different sources: The Odum Institute at UNC, the Inter-University Consortium for Political and Social Research (ICPSR), the Association of Religion Data Archives (ARDA), and Sociometrics. Users may obtain the data from any of these sources, depending on their needs. The more extensive restricted-use data, available by contractual agreement, will be distributed only to certified researchers who commit themselves to maintaining limited access. To be eligible to enter into a contract, researchers must have an IRB-approved security plan for handling and storing sensitive data and sign a data-use contract agreeing to keep the data confidential. Contractual data are provided in separate, linkable datasets and contain a hidden signature identifying the purchaser.
• Accessibility link

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The Northern Swedish Cohort

• General Description: The original research topic was to examine the health consequences of youth unemployment. The cohort has been followed up five times—in 1981 (age 16 years), 1983 (age 18 years), 1986 (age 21 years), 1995 (age 30 years) and 2008 (age 43 years).
• Sample Size: The cohort consists of all pupils who in 1981 attended, or should have attended, the last year of compulsory school (age 16 years) in all schools in the municipality of Luleå (n=1,080).
• Biologic Samples/Measures: Blood samples at age 43 years.
• Accessibility: These data are not freely available but collaborative ideas are welcome. Anne Hammarström is the main contact person. The website with documentation for the cohort and detailed information about variables and publications is available.
• Accessibility link: Inquiries should be made to anne.hammarstrom@fammed.umu.se.

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The Malawi Longitudinal Study of Families and Health (MLSFH)

• General Description: MLSFH is one of very few long-standing publicly available longitudinal cohort studies in a sub-Saharan African (SSA) context. It provides a rare record of more than a decade of demographic, socioeconomic and health conditions in one of the world's poorest countries. The MLSFH permits researchers to investigate the multiple influences that contribute to HIV risks in sexual partnerships, the variety of ways that people manage risk within and outside of marriage, the possible effects of HIV prevention policies and programs, and the mechanisms through which poor individuals and communities cope with the impacts of high morbidity and mortality.
• Sample Size: Data collection rounds occurred in 1998, 2001, 2004, 2006, 2008, 2010 and 2012 for up to 4,000 individuals. The MLSFH began in 1998 with a sample of 1,532 ever-married women aged 15–49 and 1,065 of their spouses. In 2004, in addition to re-interviewing the 1998 and 2001 study population and new spouses, the MLSFH added a sample of approximately 1,000 adolescents aged 15–24 to compensate for the aging of the initial MLSFH sample and the underrepresentation of unmarried individuals at adolescent and young adult ages.
• Biologic Samples/Measures: Testing for HIV, gonorrhea, chlamydia, trichomonas, serum and urine assays.
• Accessibility: Public use versions of the MLSFH data without identifying individual or village information are made publicly available with some delay after data collection. Researchers interested in using MLSFH data that have not (yet) been made available as part of the MLSFH public use data files can submit a two-page proposal (including an analysis plan and IRB plan) to the MLSFH principal investigator (mailto:hpkohler@pop.upenn.edu). 
• Accessibility link

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The 1934–66 Mysore Birth Records Cohort in South India

• General Description: Between 1993 and 2001, men and women born as singletons during 1934–1966 at Holdsworth Memorial Hospital, Mysore, southern India, were traced by a house-to-house survey of the area of the city surrounding the hospital, and matched to their birth records. The studies with this cohort were among the first in a low- and middle-income country to test developmental origins of health and disease (DOHaD) concepts.
• Sample Size: Using birth records in India from 1934 onward, researchers contacted 1,069 individuals in 1993 then ages 40-60. Follow up has continued with subsets (n=383) followed up again in 2003. Also, an intergenerational cohort has been established with 506 adult offspring ages 20-46.
• Biologic Samples/Measures: Hand X-rays, ECG, serum samples.
• Accessibility: The study data are not freely available, but the Mysore Birth Records Cohort team would welcome collaborations with other researchers.
• Accessibility link: For further information contact Dr. SC Karat or Dr. Murali Krishna based at Holdsworth Memorial Hospital, Mysore in India, or Professor Caroline Fall at MRC Lifecourse Epidemiology Unit, Southampton in the UK.

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UK Millennium Cohort Study (MCS) 

• General Description: An observational, multidisciplinary cohort study in the UK that was set up to follow the lives of children born at the turn of the new century. A range of health-related data have been collected as well as measures concerning child development, cognitive ability and educational attainment. The data also include a wealth of information describing the social, economic and demographic characteristics of the cohort members and their families.
• Sample Size: The MCS is nationally representative and 18,552 families (18,827 children) were recruited when the child was 9 months of age. There have currently been five main sweeps of data collection, at ages 9 months and 3, 5, 7, 11 and 14 years.
• Biologic Samples/Measures: Saliva samples, accelerometer data, baby teeth.
• Accessibility: Data from the MCS surveys are held and distributed by the UK Data Service, and are freely available to researchers under standard conditions.
• Accessibility link

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The Institute of Nutrition of Central America and Panama (INCAP) Nutrition Trial Cohort Study

• General Description: Follow up from a nutritional intervention trial in Guatemala between 1969-1977. The follow-up studies, conducted since 1988, have been designed to investigate (i) growth, strength and flexibility and body composition; (ii) medical history and cardio-metabolic risk factors; (iii) schooling attainment and cognitive functioning; (iv) marriage, reproduction and family formation; (v) occupation, income, asset and wealth accumulation; (vi) mother–child interactions and (vii) diet and physical activity.
• Sample Size: 2,392 children were randomized to the nutritional intervention. The most comprehensive follow-up of the entire cohort took place in 2002–4 (n=1,570) when the mean age of participants was 32 years. Follow-up studies of cohort members were conducted in 1988–89, 1996–99, 2002–04 and 2005–07. An intergenerational transfer study has linked offspring of participants and collected information on participant's parents, establishing 3 generations of participants in a subset.
• Biologic Samples/Measures: Serum (already analyzed for fasting capillary total cholesterol, HDL-cholesterol, triglyceride, glucose, haemoglobin).
• Accessibility: "The Human capital dataset (2002-04) is restricted, and is available only under specific contractual conditions because of the risks of identifying respondents in the survey."
• Accessibility link

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1970 British Birth Cohort (BCS70)

• General Description: BCS70 began as the British Births Survey, when data was collected about the births and social circumstances of over 17,000 babies born in England, Scotland, Wales, and Northern Ireland. The study aimed to examine the social and biological characteristics of the mother in relation to neonatal morbidity.
• Sample Size: Birth (16,571); age 5 (13,071); age 10 (14,874); age 16 (11,621); age 26 (9,003); age 30 (11,261); age 34 (9,656). The last interview also includes information about subject's offspring.
• Biologic Samples/Measures: No biologic samples reported.
• Accessibility: Data can be accessed through the UK Data Service at the University of Essex. The following page on the UK Data Service website lists the available data, under the different licenses, some data is also listed under related resources, this is mostly data deposited other than by CLS.
• Accessibility link

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International Childhood Cancer Cohort Consortium (I4C)

• General Description: I4C aims to examine associations between environmental exposures and the incidence of childhood cancers by pooling prospective population data from one million pregnant mothers and their babies.
• Sample Size: 6 cohorts currently contribute to pooled analyses (n=382,000) mother/child dyads. Goal is one million pairs.
• Biologic Samples/Measures: Cord blood, newborn screening, saliva, venous blood available in some cohorts.
• Accessibility: Contact Gabriella Tikellis for project participation and data access.
• Accessibility link: Inquiries should be made to gabriella.tikellis@mcri.edu.au.

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Barwon Infant Study

• General Description: The Barwon Infant Study (BIS) is a population-derived birth cohort study (n =1074 infants) with antenatal recruitment, conducted in the south-east of Australia (Victoria). BIS has been designed to facilitate a detailed mechanistic investigation of development within an epidemiological framework.
• Sample Size: Participants have been reviewed at birth and at 1, 6, 9 and 12 months, with 2- and 4-year reviews under way.
• Biologic Samples/Measures: Biological samples and measures include: maternal blood, feces and urine during pregnancy; infant urine, feces and blood at regular intervals during the first 4 years; lung function at 1 month and 4 years; cardiovascular assessment at 1 month and 4 years; skin prick allergy testing and food challenge at 1 year; and neurodevelopmental assessment at 9 months, 2 and 4 years.
• Accessibility: Requests for access to the data or biosamples and establishment of collaborative projects are considered by the BIS Steering Committee.
• Accessibility link: E-mail peter.vuillermin@deakin.edu.au.

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Black Women's Health Study

• General Description: The BWHS gathers information on many conditions that affect Black women — breast cancer, lupus, premature birth, hypertension, colon cancer, diabetes, uterine fibroids, and more. It was begun in 1995 with 20 years of follow up.
• Sample Size: 59,000 women age 21-69 (median age 38) were enrolled in 1995 and have completed biennial questionnaires. Follow up through the original cohort is 80% through 7 completed questionnaire cycles.
• Biologic Samples/Measures: None noted.
• Accessibility: Decisions about data sharing will be made by the BWHS Data Sharing Committee based on the scientific value and feasibility of the proposed study, as considerable time and resources have to be committed to any sharing of data. For accepted proposals, the BWHS will identify a BWHS investigator to collaborate with the outside investigator.
• Accessibility link: Investigators who wish to analyze data or samples collected in the BWHS or to have BWHS data entered into pooling projects should contact Dr. Lynn Rosenberg or Dr. Julie Palmer for information on how to submit a proposal.

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The Health and Retirement Study (HRS)

• General Description: HRS is a nationally representative longitudinal survey of individuals over age 50 households in the U.S. The survey, which has been fielded every 2 years since 1992, was established to provide a national resource for data on the changing health and economic circumstances associated with aging at both individual and population levels. Since 2006, data collection has expanded to include biomarkers and genetics as well as much greater depth in psychology and social context. This blend of economic, health and psychosocial information provides unprecedented potential to study increasingly complex questions about aging and retirement.
• Sample Size: The survey consists of over 37,000 individuals in 23,000 households. The initial HRS cohort, recruited in 1992, consisted of persons born 1931–41 (then aged 51–61) and their spouses of any age. A second study, Asset and Health Dynamics Among the Oldest Old (AHEAD), was fielded the next year to capture the cohort born 1890–1923 (then aged 70 and above). HRS now employs a steady-state design, replenishing the sample every six years with younger cohorts not previously represented. In 2004, Early Baby Boomers (EBB, born 1948–53) were added, and in 2010, Mid Baby Boomers (MBB, born 1954–59) were added. The main survey occurs every two years, making 2012 the 11th follow-up of the 1992 cohort.
• Biologic Samples/Measures: Blood pressure; breathing; grip strength; balance; timed walk; measured height and weight; waist circumference; saliva; blood spots.
• Accessibility: Public, sensitive and restricted data can be accessed through the HRS website. Public data are available to all registered users. Sensitive and restricted data require submission of a separate data use agreement. Researchers at RAND Corporation have created a user-friendly version of much of the HRS public data.
• Accessibility link

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Lifelines: a three generation cohort study and biobank

• General Description: The LifeLines Cohort Study is a large population-based cohort study and biobank that was established as a resource for research on complex interactions between environmental, phenotypic and genomic factors in the development of chronic diseases and healthy aging. Between 2006 and 2013, inhabitants of the northern part of The Netherlands and their families were invited to participate, thereby contributing to a three-generation design.
• Sample Size: Baseline data were collected for 167,729 participants, aged from 6 months to 93 years. Follow-up visits are scheduled every 5 years, and in between participants receive follow-up questionnaires. Over two-thirds of the participants had at least one family member participating in LifeLines (67%, n = 112 596). The partner of 34% n = 56 944) of the participants was included and a child of 27% (n = 45 169) of the participants was included. In total, 51% of the participants (n = 84 888) were part of a two-generation relationship that was embedded in the study, and 12% (n = 20 362) of a three-generation relationship. Genomic data are available including genome-wide genetic data of 15 638 participants.
• Biologic Samples/Measures: Urine, blood, genome-wide genetic data.
• Accessibility: The LifeLines Cohort Study is a resource for the international scientific community for research on healthy aging. It allows researchers worldwide to browse through the data and select the data that they need for answering their research question. The online LifeLines data catalogue provides detailed information on all collected variables.
• Accessibility link: Researchers from public institutes can apply for the data and biomaterial through a proposal that is submitted to the LifeLines Research Office. All proposals are reviewed on scientific quality and methodology by the LifeLines scientific board, which includes scientists from different academic institutes in The Netherlands.

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Fragile Families and Child Wellbeing Study

• General Description: The Fragile Families & Child Wellbeing Study is following a cohort of children born in large U.S. cities between 1998 and 2000 (roughly three-quarters of whom were born to unmarried parents). The core Study was originally designed to primarily address four questions of great interest to researchers and policy makers: (1) What are the conditions and capabilities of unmarried parents, especially fathers?; (2) What is the nature of the relationships between unmarried parents?; (3) How do children born into these families fare?; and (4) How do policies and environmental conditions affect families and children?
• Sample Size: The cohort began with nearly 5,000 children enrolled at birth. Follow up has collected information when the child turned 1, 3, 5, 9, and most recently 15 years of age. 3,580 primary care givers and 3,444 teens were still enrolled in the 15-year follow up wave.
• Biologic Samples/Measures: DNA sampling was conducted when the child was 9 and/or 15 years old. Select SNPs are analyzed and available.
• Accessibility: Currently, there are six waves of publicly available data including baseline and Year 1, Year 3, Year 5, Year 9, and Year 15 follow-ups. In order to protect the confidentiality of survey respondents, geographic identifiers, medical records data, contextual data (i.e., census tract characteristics), macroeconomic indicators, and genetic biomarkers are not available in the public use data files. Researchers may apply for restricted use.
• Accessibility link

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The National Childrens Study (NCS)

• General Description: The NCS was a planned large-scale, long-term study of U.S. children and their parents designed to study environmental influences on child health and development. Pregnant women were enrolled, along with spouses or partners, with follow up of infants. The research focused both on the physical and psychosocial health of the mother and developing fetus, as well as environmental exposures in pregnancy.
• Sample Size: The NCS Vanguard (Pilot) Study began in 2009, testing methods and procedures planned for use in a larger Main Study. When recruitment ended in July 2013, the Vanguard Study had enrolled approximately 5,000 children in 40 locations across the country.
• Biologic Samples/Measures: Blood, breastmilk, cord, blood, hair, meconium, nails, placenta, saliva, umbilical cord, urine, vaginal swabs.
• Accessibility: The NCS Archive offers two levels of access to researchers--publicly available data available for download (Level 1) and restricted data (Level 2) accessed through a research portal.
• Accessibility link

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IDEFICS (Identification and prevention of dietary and lifestyle-induced health effects in children and infants) Study

• General Description: The IDEFICS cohort addresses the impact of dietary, behavioral, biological, socioeconomic and environmental factors on non-communicable chronic diseases in a large diverse sample of European children during sensitive developmental periods. Inclusion of parents/siblings and assessment of peer networks enable investigation of the children as members of social networks in a transgenerational approach.
• Sample Size: At baseline (2007-08), 16,228 children aged 2-9.9 years from Belgium, Cyprus, Estonia, Germany, Hungary, Italy, Spain and Sweden were examined. Children were re-examined after 2 and 6 years, with more than 12,000 children having participated in at least two examination waves; 7,105 index children and 2,512 newly recruited siblings participated in the most recent wave.
• Biologic Samples/Measures: Anthropometry, blood pressure, heel ultrasonography, accelerometry, saliva, blood, urine.
• Accessibility: Use of data requires a mutual agreement between the study consortium and interested third parties on a case-by-case basis.
• Accessibility link: For corresponding requests, please contact the study coordinator.

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E3N (Etude Epidémiologique auprès de femmes de la Mutuelle Générale de l'Education Nationale)

• General Description: E3N is the largest epidemiological study ever initiated in France, with the aim of generating a large dataset that would facilitate the identification of the environmental causes of cancer and other chronic diseases. Also, E4N complimentary cohort with children and grandchildren has been created.
• Sample Size: In June 1990, a questionnaire was sent to 500,000 women who had been born between 1925 and 1950; 100,000 women responded. Through 2015, nine follow-up questionnaires have been sent every 2–3 years from the baseline. Response rates vary from 75-90%.
• Biologic Samples/Measures: Anthropometric measurements, saliva samples (DNA), plans for tumor tissue bank.
• Accessibility: Documentation for this cohort, including the questionnaires, photo booklets sent with the questionnaires, information leaflets sent to the participants and detailed information about the research and publications is available at [http://www.E3N.fr]. Requests for collaborations are welcome, particularly those regarding rare diseases.
• Accessibility link: Further information can be obtained by contacting E3N.SECRETARIAT@gustaveroussy.fr

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