The purpose of this project is to describe changes in health and functioning among older people. Living conditions and life-style are studied as predictors of health, functioning, need of care and mortality. This multidisciplinary study includes several prospective arms. In 1988 a random sample of people aged 65-84 years were interviewed in their homes. Follow up interviews for them were conducted in 1996 and 2004. During the same years 65-69 year old people were interviewed to capture cohort changes in aging. In 1989 all men born before 1924 and every other woman living in nursing home were interviewed. In 1989 all 75-year-old and 1990 all 80-year-old residents of Jyväskylä were studied in the laboratory with extensive functional testing and clinical examinations. The 75-year-old people were followed up after 5, 10 and 15 years and the 80-year-olds after 5 and 10 years. In addition, register-based data on hospital and long-term care is being updated until the entire cohort becomes extinct. Altogether, 2500 have participated in these studies.
Archives
The Health Survey for England series was designed to monitor trends in the nations health, to estimate the proportion of people in England who have specified health conditions, and to estimate the prevalence of risk factors associated with these conditions. The surveys provide regular information that cannot be obtained from other sources on a range of aspects concerning the publics health. The surveys have been carried out since 1994 by the Joint Health Surveys Unit of NatCen Social Research and the Research Department of Epidemiology and Public Health at UCL. Individuals are asked for written consent to link their HSE records to mortality and cancer registration data (from HSE 1994 onwards) and to Hospital Episodes Statistics (from HSE 2003 participants onwards).
Each survey in the series includes core questions and measurements (such as blood pressure, height and weight, and analysis of blood and saliva samples), as well as modules of questions on topics that vary from year to year. New topics in 2014 year included hearing and mental health. The achieved sample for the 2014 survey was 8,077 adults (aged 16 and over) and 2,003 children (aged 0-15).
The longitudinal Study of Cognitive Change in Normal Healthy Old Age (LSCC) is a population study including 6,342 healthy residence of Greater Manchester and Newcastle-upon-Tyne aged from 42 to 92 in 1983. Two different batteries of cognitive tests were alternately administered biennially with additional questionnaires and Dna sample collection until 2003. The aims of the study were to:
to determine sources of variations in rates of cognitive change between individuals
to identify factors that slow or accelerate cognitive ageing and that prolong mental productivity or accelerate decline
to generate and test functional models for the processes of biological ageing, especially of ageing of the brain and the central nervous system
to test whether the neurophysiological and consequent cognitive changes differ in idiosyncratic patterns between individuals
The LRRK2 Cohort Consortium (LCC) comprises three closed studies: the LRRK2 Cross-sectional Study, LRRK2 Longitudinal Study and the 23andMe Blood Collection Study. The LCC followed standardized data acquisition protocols, and clinical data and biological samples are stored in a comprehensive Parkinson’s database and biorepository, respectively. A total of 1,213 Idiopathic PD subjects, 1,168 PD subjects with genetic mutations in LRRK2, 1,123 unaffected subjects with genetic mutations in LRRK2, and 779 Healthy Controls (HC) were recruited.
The Parkinson’s Progression Marker Initiative (PPMI) is an observational, international study designed to establish biomarker defined cohorts and identify clinical, imaging, genetic and biospecimen Parkinson’s disease (PD) progression markers to accelerate disease modifying therapeutic trials. A total of 423 untreated PD, 196 Healthy Control (HC), 64 SWEDD (scans without evidence of dopaminergic deficit) subjects, and 65 Prodromal subjects (individuals with hyposmia or REM Sleep Behavior Disorder) were enrolled. PPMI is actively enrolling affected and unaffected individuals with genetic mutations in LRRK2, GBA, or SNCA through the end of 2018. For the most up to date enrollment numbers, please visit http://www.ppmi-info.org/study-design/study-cohorts/. To enroll PD subjects as early as possible following diagnosis, subjects were eligible with only asymmetric bradykinesia or tremor plus a dopamine transporter (DAT) binding deficit on SPECT imaging. Acquisition of data was standardized as detailed at www.ppmi-info.org.
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 Vallecas Project is developed in the Research Unit of the Alzheimer’s Center of the Reina Sofía Foundation by researchers of the CIEN Foundation. Its main objective is to determine a probabilistic algorithm for the identification of individuals at risk of dementia type Alzheimer’s disease (AD) in the course of a few years. This algorithm will be based on the combination of sociodemographic, clinical, neurological, neuropsychological, biological (from blood determinations) and neuroimaging (various 3 Tesla magnetic resonance modalities).
The recruitment phase of the Vallecas Project participants was extended from October 2011 to December 2013. Finally, a total of 1,213 volunteers aged between 70 and 85 and of both sexes were initially evaluated. Once included in the study, it is monitored annually for 5 years in order to assess the evolutionary profile of all participants, specifically identifying those who develop cognitive impairment and / or dementia. The cohort is being followed up annually for 4 years after the baseline.
LEILA75+ is a prospective population-based cohort study on the epidemiology of dementia and other neurodegenerative disorders. The main aims of the study included to determine a) the prevalence and incidence of dementia as well as subtypes of dementia, b) the prevalence and incidence of mild cognitive impairment (MCI) and c) the occurrence of other related conditions, such as subjective cognitive decline (SCD). Likewise, it was aimed at identifying risk factors and groups of high-risk-individuals for the development of dementia, MCI and SCD.
Overall, 1,692 individuals of at least 75 years of age (from private households as well as from institutions) were approached via random selection from the registry office of the city of Leipzig (response rate: 81%). Finally, the LEILA75+ cohort consisted of 1,265 individuals at baseline. Data collection took place at participants homes through structured interviews (incl. socio-demographic variables, a cognitive test battery/SIDAM, functional and psychosocial assessments, medical conditions). If participants were not able to complete assessments, proxy information was gathers from relatives. After baseline assessment in 1997/1998, 5 follow-up waves were conducted every 1.5 years. Additionally, a long-term follow-up was performed 15 years after baseline.
Further study details have been published in:
Riedel-Heller SG, Busse A, Aurich C, Matschinger H, Angermeyer MC. Prevalence of dementia according to DSM-III-R and ICD-10: results of the Leipzig Longitudinal Study of the Aged (LEILA75+) Part 1. British Journal of Psychiatry 2001; 179: 250-254.
Riedel-Heller SG, Busse A, Aurich C, Matschinger H, Angermeyer MC. Incidence of dementia according to DSM-III-R and ICD-10: results of the Leipzig Longitudinal Study of the Aged (LEILA75+), Part 2. British Journal of Psychiatry 2001; 179: 255-260.
Riedel-Heller S, G, Schork A, Matschinger H, Angermeyer M, C, Recruitment Procedures and Their Impact on the Prevalence of Dementia. Neuroepidemiology 2000;19:130-140.
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]).