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The European Prospective Investigation into Cancer and Nutrition (EPIC) is a prospective cohort with more than 521,000 study participants enrolled from 23 centres in 10 western European countries. Detailed information on diet, lifestyle characteristics, anthropometric measurements, and medical history was collected at recruitment (1992-1999).

Biological samples including plasma, serum, leukocytes, and erythrocytes were also collected at baseline from 387,889 individuals and are stored at the International Agency for Research on Cancer – World Health Organization (IARC-WHO) and mirrored at EPIC collaborating centres. Overall, the EPIC biorepositories host more than 9 million aliquots, constituting one of the largest biobanks in the world for biochemical and genetic investigations on cancer and other chronic diseases. Follow-up measures of lifestyle exposures have been collected and will be centralized at IARC in 2016.

Last update – 25/04/2017

This is the largest multi-centre study of ageing in men in the world and intends to identify the nature and frequency of some of the symptoms of ageing in men, the relationships between these symptoms to hormonal changes and other risk factors.

In total, 3369 men in 8 different countries in Europe are taking part in the study. These 8 centres are Manchester – UK, Malmo – Sweden, Tartu – Estonia, Lodz – Poland, Szeged – Hungary, Florence – Italy, Santiago de Compostela – Spain, Leuven – Belgium. In each centre, ~400 men aged between 40 and 79 years at the start of the study have been recruited. They will be followed up to look for future changes in their hormonal and general health status. The men will be investigated initially on two occasions, at the start and then ~5 years later. It is highly likely that the study will continue beyond 5 years and further testing will be organised subsequently. The aims of the study are to:

Document geographical variations in the ageing-related involution decline of endocrine function in European men;
Explain the variability in the rate of secular decline in endocrine functions on the basis of socio-demographic, lifestyle, co-morbid, ethnic/racial, or genetic factors;
Predict the physical and psychological health status of individuals based on the variation in ageing-related endocrine decline and changes in body composition.

Last update – 24/04/2017

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 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 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 British Regional Heart Study (BRHS) is a prospective study in middle-aged men drawn from general practices in 24 British towns, 7,735 men were recruited in 1978-1980. It was set up to determine the factors responsible for the considerable variation in coronary heart disease, hypertension and stroke in Great Britain. It also seeks to determine the causes of these conditions in order to provide a rational basis for recommendations towards their prevention.

Following the collection of baseline date in 1978-80 the cohort has been followed up through the participants, two-yearly GP Record Reviews, and the Office of Population and Census Surveys. Participants have been re-contacted through questionnaires or assessment in 1983-85, 1992, 1996, 1998-2000, 2003, 2005, 2007 and 2010-2012, 2014, 2015, 2016.

Last update – 21/02/2017

There are over 800,000 people with dementia in the UK today, and this figure is set to double in the next 30 years. Dementia has a huge impact on a person’s life and is one of society’s most urgent health and social care challenges. Despite this, treatment for dementia is very limited and there is no cure.

Human tissue is vital for dementia research but is currently in short supply and is not covered in standard organ donation schemes. With the support of Alzheimer’s Society and Alzheimer’s Research UK, Brains for Dementia Research was set up in 2007 to establish a network of brain bank facilities across England and Wales.

It is now a ‘gold standard’ for brain tissue banking, linking six leading centres (based in London, Oxford, Newcastle, Bristol, Manchester and Cardiff) in a network of common standards, best practice and cooperation. This lays the foundation to enable the highest quality dementia research, which aims to find a cure for dementia. In each bank, people with mild cognitive impairment or a diagnosis of dementia, and healthy participants, are supported to donate their brain by specialist research nurses.

This initiative is unique from other brain banks, as the memory, thinking and behaviour of each prospective donor are monitored throughout their later life through regular assessments. This provides researchers with a complete medical history to accompany the donated brain tissue, allowing them to see how brain changes correlate with symptoms.

Last update – 09/05/2018

The NIMROD (Neuroimaging of Inflammation in Memory and Other Disorders) study aims to understand the role of inflammation in several forms of dementia, memory loss and depression (Alzheimer’s disease (AD), dementia with Lewy bodies (DLB), Parkinsons disease dementia (PDD), progressive supranuclear palsy (PSP), frontotemporal dementia (FTD), late life depression (LLD), mild cognitive impairment (MCI)). It also aims to understand the changes in the immune system, from immune cells and other components in the blood and cerebrospinal fluid.

To achieve this, NIMROD looks at brain changes in dementia, depression and related disorders in several different ways, detecting differences in brain structure and function, measuring inflammation and annual psychology and memory assessments. A further aim is to investigate if neuroinflammation can predict subsequent clinical course, including cognitive and functional decline.

Last update – 01/02/2017

GENFI is a five year longitudinal biomarker cohort study of genetic Frontotemporal Dementia and its associated disorders (including MND/ALS) investigating members of families with a known mutation in GRN or MAPT or an expansion in C9orf72 (including those affected with the disorder as well as at-risk members of families). Non-carrier first-degree relatives will serve as a control group.
All GENFI participants will be assessed longitudinally (annually) with a set of clinical, neuropsychiatric, cognitive, imaging and biosample protocols.

Last update – 25/01/2017