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The Southall And Brent Revisited Study (SABRE) is the largest tri-ethnic population-based cohort in the UK, involving nearly 5000 European, Indian Asian and African Caribbean men and women. It investigates the causes of diabetes and disorders of the heart and circulation and examines underlying reasons for ethnic differences in risk of these disorders.

The participants were aged 40-69 when first studied between 1989 and 1991. In 2008-2011 a comprehensive combined morbidity and mortality follow up was carried out, together with non-invasive clinical measurements in order to quantify sub-clinical disease. SABRE visit 2 tested hypotheses generated from the Southall and Brent baseline studies and ongoing mortality follow-up.

SABRE Visit 3 (25 year follow-up visit) started in July 2014 and is collecting data on index participants and new participants, including partners of index participants. The focus of this visit is on cardiac, cognitive and physical function in older age, in association with mid-life risk factors. Ethnic and gender differences in function will also be examined.

Last update – 10/04/2017

TRACK-HD was a prospective observational biomarker study in participants with premanifest and early Huntington’s disease (HD). Track-HD assessed longitudinal data collected at baseline, 12 months, 24 and 36 months at sites in Leiden (Netherlands), London (UK), Paris (France), and Vancouver (Canada). Participants were individuals without HD but carrying the mutant HTT gene (ie, premanifest HD), patients with early HD, and healthy control individuals matched by age and sex to the combined HD groups. Data were collected with 3T MRI, clinical, cognitive, quantitative motor, oculomotor, and neuropsychiatric assessments. TrackOn-HD followed on from TRACK-HD aiming to investigate compensatory mechanisms in premanifest gene carriers. Baseline, 12 and 24 month data was collected from the same four sites on premanifest gene carriers and healthy controls including 3T MRI, task and resting state fMRI, DTI, clinical, cognitive, quantitative motor and neuropsychiatric assessments.

Last update – 11/04/2017

The Airwave Health Monitoring Study was established to evaluate possible health risks associated with the use of TETRA, a digital communication system used by the police forces and other emergency services in Great Britain since 2001. It is a long-term observational study following up the health of the police force with respect to TETRA exposure, and ability to monitor both cancer and non-cancer health outcomes. Around 53,000 participants have been recruited between 2004 and 2015.

Last update – 05/05/2017

The CLSA will collect information on the changing biological, medical, psychological, social, lifestyle and economic aspects of people’s lives across Canada. These factors will be studied to understand how, individually and in combination, they have an impact in both maintaining health and in the development of disease and disability as people age

A total of 21,241 people from across Canada have agreed to take part in a telephone interview, once every three years.

An additional 30,097 people consented to participate in an in-home interview, and a visit to one of 11 Data Collection Sites across Canada where they take part in a range of physical assessments.

These participants were selected randomly, and were aged 45 to 85 when first contacted. The interviews and visits will take place once every three years over the 20-year course of the study

The study has entered its next phase where each individual recruited between 2010 and 2015 (baseline) will be re-contacted for the first follow-up. This will be conducted between 2015 and 2018. During this phase, the CLSA research team will collect the same type of information that was collected at baseline, along with several new measures that have been introduced.

Last update – 12/05/2017

InveCe.Ab (Invecchiamento Cerebrale ad Abbiategrasso) is a longitudinal, population-based study of disorders of brain ageing involving the assessment and long-term monitoring of the physical conditions and cognitive status. The target population comprises all Abbiategrasso residents born between 1935 and 1939, a reference sample, according to Population Register data, of around 1,700 people.

Those who agreed to participate in the Invece.Ab study were enrolled in a cross-sectional assessment and will be contacted two and four years after the initial data collection to participate in the longitudinal survey. Both the cross-sectional and longitudinal assessments include a medical evaluation, a neuropsychological test battery, several anthropometric measurements, a social and lifestyle interview, blood analyses, and the storage of a blood sample for the evaluation of putative biological markers.

Last update – 02/05/2017

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 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