The Cardiovascular Health Study (CHS) is an NHLBI-funded observational study of risk factors for cardiovascular disease in adults 65 years or older. Starting in 1989, and continuing through 1999, participants underwent annual extensive clinical examinations. Measurements included traditional risk factors such as blood pressure and lipids as well as measures of subclinical disease, including echocardiography of the heart, carotid ultrasound, and cranial magnetic-resonance imaging (MRI). At six month intervals between clinic visits, and once clinic visits ended, participants were contacted by phone to ascertain hospitalizations and health status.

Information on dementia comes from two Ancillary Studies. The CHS Cognition Study (Dr. Lewis Kuller, PI) included 3608 participants who had an MRI in 1992-94 and who were followed for dementia through 1999. A follow-up study was done at the Pittsburgh field center that included 532 participants followed through 2013 (Dr. Oscar Lopez,PI).

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 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 Uppsala Birth Cohort Multigeneration Study (UBCoS) started in 2005 when we were first able to combine existing data on a representative and well-defined cohort of 14,192 males and females born in Uppsala from 1915-1929 (the Uppsala Birth Cohort: UBCoS) with information on descendants of the original cohort members obtained from routine registers.

In 2007-2011, the study was further developed by additional data collection in school archives and records from Census 1930 and the period of follow-up was extended till end of year 2009.

The study is unique in investigating intergenerational effects as “forward in time” processes, starting at the beginning of the last century (i.e. well before any of the routine registers were in place). Intergenerational associations can be currently investigated in more than 140,000 study subjects from families spanning up to five generations, including the 14,192 original cohort members, their 22,559 children, 38,771 grandchildren and 25,471 great grandchildren born up to 2009.

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.

UK Biobank is a major national health resource, and a registered charity in its own right, with the aim of improving the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses – including cancer, heart diseases, stroke, diabetes, arthritis, osteoporosis, eye disorders, depression and forms of dementia.

500,000 people aged between 40-69 years were recruited in 2006-2010 from across the country to take part in this project. They have undergone measures, provided blood, urine and saliva samples for future analysis, detailed information about themselves and agreed to have their health followed. The cohort is primarily followed through data linkage but the cohort was re-contacted in 2012-13 with a further 100,000 to be approached over the next few years.

The European Prospective Investigation into Cancer and Nutrition (EPIC) is a prospective cohort with more than 521,000 study participants enrolled from 23 centres in 10 western European countries. Detailed information on diet, lifestyle characteristics, anthropometric measurements, and medical history was collected at recruitment (1992-1999).

Biological samples including plasma, serum, leukocytes, and erythrocytes were also collected at baseline from 387,889 individuals and are stored at the International Agency for Research on Cancer – World Health Organization (IARC-WHO) and mirrored at EPIC collaborating centres. Overall, the EPIC biorepositories host more than 9 million aliquots, constituting one of the largest biobanks in the world for biochemical and genetic investigations on cancer and other chronic diseases. Follow-up measures of lifestyle exposures have been collected and will be centralized at IARC in 2016.

Last update – 25/04/2017

GENFI is a five year longitudinal biomarker cohort study of genetic Frontotemporal Dementia and its associated disorders (including MND/ALS) investigating members of families with a known mutation in GRN or MAPT or an expansion in C9orf72 (including those affected with the disorder as well as at-risk members of families). Non-carrier first-degree relatives will serve as a control group.
All GENFI participants will be assessed longitudinally (annually) with a set of clinical, neuropsychiatric, cognitive, imaging and biosample protocols.

Last update – 25/01/2017