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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

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 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

GENDER is a study of unlike-sex twin pairs born between 1906 and 1925 (Gold et al., 2002). A survey concerning health and health behavior was mailed in 1994 with responses from 1,210 twins from 605 pairs where both responded. Mean age at baseline questionnaire assessment was 74.43 (SD 4.28) and all are Caucasians. A baseline in-person evaluation of 498 twins from 249 pairs between 70 and 80 years of age was undertaken between 1995 and 1997, and included an interview and tests of cognitive and physical functioning. Two additional in-person waves followed at 4-year intervals. Finally, a second survey was mailed in 2007 to all living twins who participated in the first mailed survey.

Last update – 04/03/2017

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

Aims & objective

To find out the known as well as some new factors which increase the risk of occurrence of stroke (half body paralysis, Lakwa) and of memory problem and other brain related problems.
To identify a group of apparently healthy people (50 years and above), carry out their health check up and follow them up over several years to detect any health problems (like heart attack, lakwa, memory problems) with increasing age.
To investigate the prevalence and incidence of and risk factors for stroke and cognitive decline in the elderly.

Updates about the health of the participants will be obtained from telephone follow-ups every six months and physical check-ups every three years. The study is expected to last for at least 10 years.

Last update – 02/02/2017

The PREVENT Research Programme has established a cohort of individuals to explore differences in the brain and cognitive function in healthy people in mid-life (aged 40-59). People are grouped into high, mid and low risk based on their family history and APOE status (a well-known risk gene for Alzheimer’s disease).

650 participants are assessed on biological indicators including markers in blood, saliva, urine and spinal fluid as well as direct imaging of the brain’s structure and function. Changes in all of these markers will be monitored at 2 years to work out if risks that predict these changes. One of the main aims of the study is to identify the earliest signs of changes in the brain whilst people are still in good health.

Last update – 13/12/2017

The Gipuzkoa Alzheimer Project (PGA) is a longitudinal study on pre-clinical Alzheimer’s disease. This study aims to investigate the prevalence, clinical, cognitive and neuroimaging features and potential risk factors related to cardiovascular health and lifestyles for pre-clinical AD in asymptomatic (or very mildly symtopmatic, e.g. SCD) subjects from the community.

Follow-up Scheduled every 3 years for a minimum of 12 years. The first 3-year follow-up was completed in June 2015. The loss of subjects in the follow up was 9 %. 80% of people who donated cerebrospinal fluid at the baseline visit did the same in this follow-up visit. Second follow-up visit (6 yrs) to be started in April 2017.

Last update: 16/01/2017