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ILSE is an interdisciplinary longitudinal study that offers the opportunity to analyze inter- and intra-individual differences and changes over the life-span as well as relations between environmental factors, behavioral aspects, life-events, health behaviors, mental and physical health and well-being. The bio-graphical approach pursued by the ILSE-study is based on the assumption that the quality of developmental experiences in early life-phases influence the performance and possibilities of adaptation in later life in a unique way.

At the first measurement point, the ILSE sample consisted of 1390 persons from East (re-search centres: Leipzig and Rostock) and West Germany (research centres: Heidelberg, Bonn and Erlangen-Nuremberg). Stratified by sex and cohort membership (born 1930-32 and 1950-52, respectively) the representative ILSE-sample was examined by a interdisciplinary research team. The first round of data collection was conducted between 1993 and 1996, the second round with n = 994 participants from the data collection centres Heidelberg, Leipzig und Rostock (return rate = 90%) was conducted between 1997 and 2000. The third round of data collection which started in January 2005 ended in 2007. A fourth wave was conducted and completed between 2014 and 2016

The Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) is a large-scale, public health study involving a representative sample of men and women aged 50 years and over living in Northern Ireland.

The primary objective of NICOLA is to collect longitudinal multidisciplinary data across a wide range of domains to be used for investigation and research relevant to ageing and making Northern Ireland a better place to grow old in.

NICOLA collects extensive information on all aspects of health, social and economic circumstances of ~8500 men and women as they grow older in Northern Ireland over a series of data collection waves approximately every 2-3 years.

Longer term research goals will investigate the determinants of retirement behaviour and economic wellbeing, the impact of cognitive function and sensory disability on decision making, the determinants of disability trajectories, the influence of social participation on these and the interaction of genetic, biological and psychosocial determinants on health and mortality.

There has been one sweep of data collection (2013 2016) and a second is currently underway (2017 – )

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 individuals 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 Health 2000 Survey, carried out in 2000-2001 in Finland, was coordinated by the National Institute for Health and Welfare, THL (the former National Public Health Institute) in co-operation with an extensive network of organizations and experts. The aim of the survey was to provide information on major public health problems, their causes and treatment, health service needs and utilization as well as functional and working capacity. The data for the survey were collected in comprehensive health examination including blood sampling, in interviews and in self-administered questionnaires. The nationally representative sample included 8,028 persons aged 30 or over of whom 85% participated in the health examination conducted at 80 areas in the mainland Finland. In addition, 1,894 young adults (18-29 years) were invited to the health interview and fill in the questionnaire. Further, 1,278 people who had taken part in Mini-Finland Health Survey carried out in 1978-1980 were invited to the re-examination.

The follow-up of the Health 2000 Survey, the Health 2011 Survey, was carried out in 2011-2012. All members of the Health 2000 sample (n=8,135), who were living in Finland in 2011 and had not refused requests to be invited to further studies, were invited to the Health 2011 Survey. In 2011, they were at least 29 years of age. A total of 59% of them participated in the health examination conducted at 59 areas in Finland. In addition, a new random sample of young adults (aged 18-28, n=1,994) was taken. A total of 415 of them were invited to the health examination and the rest of them (1,579) received only the postal questionnaire. Further, 920 people who had previously taken part in the Mini-Finland Health Survey and invited to re-examination in 2001 were invited.

The Health 2000/2011 cohort is also continuously followed-up by linkage to Finnish nationwide registers.

This project comprises of two complementary parts. One part is aimed at the development of innovative diagnostic techniques to detect molecular signatures of AD based on disturbances of amyloid metabolism and glutamate neurotransmission. In this part, the focus is on the two most promising diagnostic approaches in AD: (molecular) imaging techniques and molecular diagnostic tests of CSF. In the second part of this study, techniques for which proof-of-concept has been found in humans are applied in a large group of AD patients. These patients are recruited in an established network of 4 collaborating memory clinics in The Netherlands, which use a standardized diagnostic protocol and share an extensive common database. Furthermore, more mature molecular, structural, and functional imaging and molecular diagnostic CSF techniques as well as the conventional diagnostic work-up will be applied from the start of the study in patients from the same network of memory clinics.

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 ageing. The Lifelines cohort distinguishes a children’s cohort (aged 0-18), an adult cohort (aged 18-65) and the elderly cohort (aged 65+). The protocol for these three sub-cohorts is largely the same, but focuses in part on the characteristics of the specific participant groups.

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. Follow-up visits are scheduled every 5 years, and in between participants receive follow-up questionnaires. Linkage is being established with medical registries and environmental data. Lifelines contains information on biochemistry, medical history, psychosocial characteristics, lifestyle and more. Genomic data are available including genome-wide genetic data of 15638 participants. Fasting blood and 24-h urine samples are processed on the day of collection and stored at -80 °C in a fully automated storage facility. The aim of Lifelines is to be a resource for the national and international scientific community. Requests for data and biomaterials can be submitted to the Lifelines Research Office ([email protected]).

Dementia with Lewy Bodies (DLB) is the second most common cause of neurodegenerative dementia in older people. The aim of LewyPro is to examine and characterise symptoms and brain changes during the prodromal period of LBD. Earlier diagnosis is important because it facilitates care planning, leads to earlier treatment of cognitive symptoms and enables earlier identification of other symptoms, including parkinsonism.

Lewy Pro is recruiting a group of people with mild cognitive impairment (MCI) and prodromal symptoms suggestive of Dementia with Lewy Bodies (DLB) and following them up annually to assess biomarker changes and clinical course. The initial assessment will include a detailed clinical assessment, a blood sample, a lumbar puncture for cerebrospinal fluid, and a DaTSCAN.

Last Update 21/09/2017

To investigate factors that are relevant to maintain functional competence, to prevent long-term disability and to minimise unnecessary service utilisation among older people. (1) Therefore, periodic assessments are performed covering information on functional status (ROBUST, postROBUST, preFRAIL, FRAIL according tio LUCAS Functional Ability Index; Dapp U et al. BMC Geriatr 2014;14:141.), health behaviour, health care use, the need of long-term care, and survival over a period of more than 10 years. (2) Long-term effects of randomised (RCT) health promotion intervention will be evaluated (Dapp U et al. Draft for Dtsch Arztebl Int 2017; Neumann L et al. J Nutr Health Aging 2017;doi:10.1007/s12603-017-0932-1). There were two approaches (a) small group sessions ﾓActive health promotion in old ageﾔ (Dapp U et al. J Gerontol A Biol Sci Med Sci 2011;66:591-8.), and (b)
home visits (Pr’fener F Z Gerontol Geriatr 2016;49:596-605).

3,326 independently living community-dwelling elderly people (60 years and over) were recruited from 21 general practices in 2000 (baseline). They were followed up over a ten year period until 2010 resulting in multidimensional data sets for every single participant at baseline, 1 year, 7 year and 9 year follow up (Dapp U et al. BMC Geriatr 2012 Jul 9;12:35.).

Last Update 21/09/2017

The CARTaGENE (CaG) study is both a population-based biobank and the largest ongoing prospective health study of men and women in Quebec. CaG targeted the segment of the population that is most at risk of developing chronic disorders, that is 40-69 years of age, from six census metropolitan areas in Quebec. The sampling was stratified by age, sex and postal groups and is proportional to the density of the population in these areas. Over 43,000 participants consented to visiting 1 of 12 assessment sites where detailed health and socio-demographic information, physiological measures and biological samples (blood, serum and urine) were captured. Participants are followed-up based on linkage to governmental health administrative databases and direct reassessment through a web portal.

Last update 21/09/2017