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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 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

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

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 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 HELIAD is a population-based, multidisciplinary, collaborative study designed to estimate the prevalence and incidence of AD, other dementias, mild cognitive impairment, and other neuropsychiatric conditions of aging in the Greek population and to investigate associations between nutrition and cognitive dysfunction/age-related neuropsychiatric diseases in this Mediterranean population.

The participants in the HELIAD study were selected through random sampling from community-dwelling individuals over the age of 65 years in the cities of Larissa (located in the province of Thessaly in Central Greece and Marousi (located within the Athens Metropolitan area). The targeted sample of enrolled participants comprised approximately 2,500 individuals. No weighting or stratified sampling (according to age, gender, or education) was performed. Follow-ups with face-to-face interviews at ~3 year intervals.

Last update – 01/02/2017

CFAS Wales aims to interview a representative sample of 3,750 people aged 65 and over in two areas in Wales (Gwynedd and Swansea). Using established and standardised techniques it will collect data that will enable the investigation of cognitive impairment, depression, physical disability and healthy active life expectancy for the whole group and within social groups. It will provide a foundation for other collaborative studies that investigate biomarkers and other early indications of risk of cognitive decline, such as imaging. It will investigate factors that may delay the onset of dementia, specifically focussing on the role of bilingualism and social networks. As the participants reside in a bilingual area this is a key opportunity.

Last update – 13/02/2017

Helsinki Birth Cohort Study (HBCS) 1934-44 is a unique birth study including 13,345 subjects in the epidemiological cohort. The cohort is a longitudinal study cohort with data throughout the life span including prenatal life, early childhood and later life. Besides extensive epidemiological data over 2000 subjects have been randomly selected for a clinical part. The subjects have been followed up clinically for over one decade with extensive phenotypic data available including metabolic data, dietary information as well as other lifestyle data. Psychological factors including personality, depression and anxiety has been focused upon.

Last update – 07/02/2017

The Dunedin Multidisciplinary Health and Development Study (DMHDS) is an ongoing, longitudinal study of the health, development and well-being of a general sample of New Zealanders. They were studied at birth (1972-73), followed up and assessed at the age of three when the longitudinal study was established. Since then they have been assessed every two years until the age of 15, then at ages 18 (1990-91), 21 (1993-94), 26 (1998-99), 32 (2003-2005), and 38 (2010-2012). It is planned to next see the Study members at age 44/45 and beyond.

Last update – 31/01/2017

The DEAS is a nationwide representative survey of the German population aged 40 and older that combines cross-sectional and longitudinal samples. Participants from baseline samples (drawn every six years) are followed up and enter the different panel samples. Panel data was collected at the same time as baseline samples until 2008. Starting from 2011, panel samples are interviewed every three years. Thus, DEAS enables an analysis of social change using the cross-sectional data of 1996, 2002, 2008, and 2014, as well as an investigation of intra-individual development over three to eighteen years (1996-2002-2008-2011-2014).

Last update – 16/02/2017