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The PROTECT Study will gather data and support innovative research to improve our understanding of the ageing brain and why people develop dementia.

We know that certain factors such as exercise, smoking and blood pressure affect our risk of dementia, and there is increasing evidence that our genes also play a role.

Participants in PROTECT will provide information about themselves and complete online assessments to measure their abilities such as memory and reasoning. By repeating these assessments each year we will monitor how they change over the study. Participants will also provide a sample of their DNA through a simple at-home kit. PROTECT participants will also have the opportunity to take part in innovative studies to answer crucial questions such as:

How do key measures, such as memory, language and reasoning change over time as we age
How do our lifestyle choices, including our exercise habits and diet affect our risk of dementia
What role do genetics play in the ageing brain? How do they affect how our brain functions and what is their influence on development of dementia?
What are the early signs of dementia and how can they be distinguished from normal ageing
What approaches can be delivered online to influence the ageing process and the development of dementia?

Last Update 21/09/2017

The Irish Longitudinal Study on Ageing (TILDA) is a large-scale, nationally representative, longitudinal study on ageing in Ireland, the overarching aim of which is to make Ireland the best place in the world to grow old.
TILDA collects information on all aspects of health, economic and social circumstances from people aged 50 and over in a series of data collection waves once every two years. TILDA is unique amongst longitudinal studies in the breadth of physical, mental health and cognitive measures collected. This data, together with the extensive social and economic data, makes TILDA one of the most comprehensive research studies of its kind both in Europe and internationally.

Last Update 21/09/2017

The Sydney Memory and Ageing Study (Sydney MAS) began in 2005 to examine the clinical characteristics and prevalence of mild cognitive impairment (MCI) and related syndromes, and to determine the rate of change in cognitive function over time.

Non-demented community-dwelling individuals (N=1037) aged 70-90 were recruited from two areas of Sydney, following a random approach to 8,914 individuals on the electoral roll. They underwent detailed neuropsychiatric and medical assessments and donated a blood sample for clinical chemistry, proteomics and genomics. A knowledgeable informant was also interviewed. Structural MRI scans were performed on 554 individuals, and subgroups participated in studies of falls and balance, metabolic and inflammatory markers, functional MRI and prospective memory. The cohort is to be followed up with brief telephone reviews annually, and detailed assessments biannually.

Last update – 20/07/2017

The CONSTANCES general-purpose cohort is intended to serve as an epidemiological research infrastructure accessible to the epidemiologic research community with a focus on chronic diseases and aging. CONSTANCES is designed as a randomly selected representative sample of French adults aged 18-69 years at inception; 200,000 subjects will be included over a five-year period. At inclusion, the selected subjects are invited to complete questionnaires and to attend a Health Screening Clinic (HSC) for a comprehensive health examination. A biobank will be set up. The follow-up includes a yearly self-administered questionnaire, and a periodic visit to an HSC. Social and health data are collected from the French national databases. Data collected for participants include social and demographic characteristics, socioeconomic status, life events, behaviors, and occupational factors. The health data cover a wide spectrum: self-reported health scales, reported prevalent and incident diseases, long-term chronic diseases and hospitalizations, sick-leaves, handicaps, limitations, disabilities and injuries, healthcare utilization and services provided, and causes of death. To take into account non-participation at inclusion and attrition throughout the longitudinal follow-up, a cohort of non-participants was set up and will be followed through the same national databases as participants.

Last update – 20/06/2017

The original GAZEL cohort was composed of 20,625 employees of the French national gas and electricity companies (15,011 male employees then aged 40 to 50 years and 5,614 women between 35 and 50 years old) at its inception in 1989.

Follow-up is continuous and includes data collection on health status, lifestyle, and socioeconomic and occupational factors from various sources. A postal questionnaire is sent to the participants each year, and data are extracted regularly from the files of the personnel and medical departments of EDF-GDF and from national registers. Participants were invited in 1999-2000, 2008 and 2011 to a health clinic where medical and biological data were collected.

The main focus of research in the past decade was devoted to the study of the persistent, long-term effects of occupational exposures after retirement; of the transition between professionally active life and retirement; and on determinants of early ageing. Accordingly, in addition to the health, behavioural and social data collected yearly since the beginning of the follow-up, new data were thus collected on cognitive complaints, cognitive and physical functioning, limitations in daily activities, time use and social relationships of retirees.

Last update – 20/06/2017

The aim of RISCA is to answer the following questions:

What is the incidence of disease manifestation in mutation carriers?
Which clinical signs precede the onset of manifest ataxia in SCA1, SCA2, SCA3 and SCA6?
What are the prevalence and incidence of preceding signs?
Are the prevalence and incidence of preceding signs affected by genotype, gender, age, estimated time until disease manifestation and repeat length?
Does the presence of certain preceding signs predict the manifestation of ataxia?
Are there MRI alterations that precede the onset of ataxia?

Study participants are followed at 24 months intervals over six years and than at irregular intervals. At each visit, study participants are asked in a structured interview for a number of predefined clinical signs that potentially precede the onset of ataxia.

Last update – 26/05/2017

Disease follow-up for all the cohorts is conducted by active follow-up every 5 years and linkage to national disease and death registries.

The Singapore Health study is a nationally representative cross-sectional survey with the aim to estimate the prevalence of:

Health conditions of hypertension, hyperlipidaemia, diabetes, overweight and obesity, hearing loss and chronic kidney disease, mental wellbeing and to allow comparison of these data with the National Health Survey 2010;
Specific health behaviours; and
Participation in health screening for chronic diseases, cervical cancer, breast cancer, colorectal cancer

2,352 Singapore citizens and permanent residents of age 18 to 79 years old participated in the survey from August 2012 to March 2013. Overall response rate was 40%. 1956 of the participants also underwent physical examination, additional surveys and provided blood and urine samples for tests and storage.

Last update – 28/06/2017

The Northern Finland Birth Cohort Studies is an epidemiological and longitudinal research program which aims to promote health and well-being of the population. The prospective data collected from the Northern Finland forms a unique resource, allowing to study the emergence of diseases which can be based on genetic, biological, social or behavioural risk factors.

NFBC includes two longitudinal and prospective birth cohorts of women and offspring collected at 20-year intervals from the same provinces of Oulu and Lapland: The NFBC1966 was set with an expected date of birth in 1966, comprising of 12,068 mothers and 12,231 children (prospective data collection from maternity cards since 16th gestational week on average), and the NFBC1986 with an expected date of birth between July, 1st 1985 and June, 30th 1986, comprising 9,362 mothers and 9,479 children (prospective data collection from 10th gestational week).

Last update – 02/05/2017

The initial aims were to examine the importance of lipids, haemostatic factors, and hormones such as testosterone, cortisol and insulin (Lichtenstein et al 1987) in the development of ischaemic heart disease (IHD). Subsequently, other hypotheses were included with a specific interest in platelet function, and psychosocial variables. With the ageing of the cohort, additional outcomes have been included in particular stroke, hearing problems and cognitive function.

The initial design attempted to contact all men aged 45 to 59 years from the town of Caerphilly and adjoining villages. 2512 subjects (response rate 89%) identified from the electoral register and general practice lists were examined between July 1979 until September 1983 (phase I).

Men were initially seen at an evening clinic, where they completed a questionnaire, had anthropometric measures and an ECG taken. They also completed a food frequency questionnaire at home (Fehily et al 1994). They subsequently re-attended an early morning clinic to have fasting blood samples for a wide variety of tests.
Quality control was examined by the use of both “blind” split samples as well as a second repeat measure on a random sub-sample to examine intra-individual variation.

The men have been followed up 5 times; Phase II (July 1984-June 1988), Phase III (Nov 1989-Sep 1993), Phase IV (Oct 1993-Feb 1997) and two further occasions via post. An additional 447 men were included in the survey at Phase II.

Last update – 11/04/2017

The Norwegian ParkWest study is a prospective population-based longitudinal cohort study of patients with incident Parkinson’s Disease in Western and Southern Norway, with a total base population of more than 1 million inhabitants. The initial cohort comprised of 212 newly-diagnosed and drug-naïve individuals with suspected Parkinson’s disease, who were followed with standardized clinical examinations every 6 months. More comprehensive assessments, including neuropsychological and behavioural evaluations, were conducted at baseline and 1-year of follow-up, and at 2-year intervals thereafter. Currently, study participants are in the 10th year of follow-up. About 110 patients are still in the study.

Last update – 10/04/2017