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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 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 key goal of EUROSCA-NHS is to determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6. To this end, a newly developed and validated ataxia scale (Scale for the Assessment and Rating of Ataxia, SARA) will be used. EUROSCA-NHS has a number of secondary aims including determination of the order and occurrence of non-ataxia symptoms, assessment of activities of daily living (ADL) and quality of life (QoL), and identification of predictors of disease progression and survival.

Patients are first seen at a baseline visit, followed by annual visits for 3 years scheduled ﾱ 3 months around the specified time point. After the initial 3 year observation period, visits are done at irregular intervals each time they went to hospital.

Last update – 12/08/2017

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 Million Women Study is the largest study of women’s health in the world. In 1996-2001, a quarter of UK women then aged 50-64 years (1.3 million women) joined the study. The aim of the study is to provide reliable information on potentially modifiable causes of common and serious illnesses, to help improve individual and public health. Study participants have provided details about their lifestyle and health and given signed consent for follow-up. Since recruitment their health has been followed mainly through electronic linkage to routinely collected NHS records (only 1.5% loss to follow-up after 20 years) and the whole surviving cohort has been re-contacted 4 times by postal re-survey to update exposures (1999-03, 2006-7, 2009-12 & 2013-14). Subsets of women have completed additional postal and online re-surveys.

Million Women Study is part of the Dementias Platform UK (DPUK), a multi-million pound public-private partnership to accelerate progress in dementias research http://www.mrc.ac.uk/research/facilities/dementias-platform-uk

Last update – 13/06/2017

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

The aim of the study was to determine the incidence of Parkinson’s disease and other degenerative / vascular parkinsonian disorders in a defined geographical area in the North-East of Scotland and to describe the long-term prognosis of patients and carers in an incident cohort compared to age-sex matched community controls.

Ascertainment:

Referrals from GPs
Referrals from hospital consultants
Hand-searching referral letters (neurology & DOME)
Electronic searching (GP, hospital discharge data)
Screening over 65 and over 75’s

Annual follow-up plus linked to death register.

Last update – 08/03/2017

The original purpose of the Add Health study was to help understand the causes of adolescent health and health behaviour with special emphasis on the effects of multiple contexts of adolescent life.

The cohort was then followed through their transition to adulthood and research turned to understanding the determinants and consequences of developmental and health trajectories from adolescence into adulthood.

Add Health combines longitudinal survey data on respondents social, economic, psychological and physical well-being with contextual data on the family, neighbourhood, community, school, friendships, peer groups, and romantic relationships, providing unique opportunities to study how social environments and behaviours in adolescence are linked to health and achievement outcomes in young adulthood. The fourth wave of interviews expanded the collection of biological data in Add Health to understand the social, behavioural, and biological linkages in health trajectories as the Add Health cohort ages through adulthood, and the fifth wave of data collection continues this biological data expansion (2016-2018).

Last update – 03/02/2017

ADNI began in October 2004. The overall goal is to validate biomarkers for Alzheimer’s disease clinical trials. One aim is to find, validate and standardize more sensitive and accurate methods to detect Alzheimer’s disease at earlier stages and mark its progress through biomarkers. The study gathered and analyzed thousands of brain scans, genetic profiles, and biomarkers in blood and cerebrospinal fluid that are used to measure the progress of disease or the effects of treatment. More information on ADNI-info.org. All data is publically available at USC/LONI/ADNI.

The three overarching longitudinal ADNI study goals are:

Validation of biomarkers, especially for amyloid and tau, for use in AD clinical trials.
To detect Alzheimer’s disease (AD) at the earliest stage possible and identify ways to track the disease through biomarkers.
To support advances in AD intervention, prevention and treatment through the application of new diagnostic methods to apply at the earliest stages technically possible – when intervention may be most effective.
To continually develop ADNI’s now- legendary data access policy and continuously improve and expand the unprecedented data sharing model.

Last update – 07/02/2017