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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

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 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

The HCS is a population-based cohort study established to assess factors important in the health, well-being, social functioning and economic consequences of ageing. The participants included community-dwelling men and women aged 55-85 years of age who reside in Newcastle, New South Wales (NSW), Australia. They were randomly selected from the NSW State electoral roll and contacted between December 2004 and December 2007.

The participants’ study data was collected through self-report postal questionnaires which covered a wide range of variables but also linked with local and national health information databases and hospital records. These provided follow-up on use of prescription medication, health service utilization and hospitalizations, morbidity and mortality. There was also a baseline clinic visit which measured a wide variety of parameters including hearing, vision, smell, balance, cognition, and lung function. Medications and diagnoses have been collected not only at baseline but also at periodic intervals during follow-up.

Last update – 31/01/2017

The main objective of the Longitudinal Ageing Study in India (LASI) is to provide comprehensive longitudinal evidence base on health, social and economic wellbeing of elderly population in India.

LASI main wave’s covers 30 states and 6 union territories of India covering a panel sample size of 60,250 elderly persons aged 45 years and above. The long-term goal of LASI is to continue this survey for the next 25 years with the first wave planned in the year 2016-17 and second wave in 2018-19. LASI aims to obtain all the indicators for each of the 30 states and 6 union territories. In addition, LASI aims at obtaining indicators for each of the four metropolitan cities of Delhi, Kolkata, Mumbai and Chennai.

Last update – 10/02/2017

The first wave of the MIDUS study collected survey data from a total of 7,108 participants. The baseline sample was comprised of individuals from four subsamples:

  1. a national RDD (random digit dialing) sample (n=3,487);
  2. oversamples from five metropolitan areas in the U.S. (n=757)
  3. siblings of individuals from the RDD sample (n=950); and (4) a national RDD sample of twin pairs (n=1,914).

All eligible participants were non-institutionalized, English-speaking adults in the coterminous United States, aged 25 to 74. Data from the above samples were collected primarily in 1995/96.

Last update – 03/02/2017

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), Parkinson’s 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

The Three-City Study (3C Study) is a population-based longitudinal study of the relation between vascular diseases and dementia in persons aged 65 years and older. A total of 9,294 participants (3,649 men and 5,645 women) were recruited from three French cities: Bordeaux (2,104), Dijon (4,931) and Montpellier (2,259).

The principal objective is to estimate the risk of dementia (Alzheimer’s disease and other types) that may be attributed to vascular factors.

In follow up 1 and 2 (2001-2004) participants were interviewed and subjected to physical and cognitive testing. In follow up 3 (2005-2012) participants completed a postal questionnaire. The third, fourth, and fith waves of follow-up examinations started in 2006 and finished in 2012. A sixth follow-up is ongoing.

Last update – 03/02/2017

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 Belgian Ageing Studies project (BAS) was developed by researchers at the Free University of Brussels (Vrije Universiteit Brussel) and University College Ghent (Hogeschool Gent). Established in the early 2000s, the BAS team engages in the scientific study of the social aspects of ageing.

The aim of the research programme of the Belgian Ageing Studies is to:

  1. Provide an instrument to measure the living conditions and quality of life of older people in Belgian municipalities.
  2. Promote evidence-based policy at the local level by providing input and mobilizing knowledge for planning and inclusive policy programmes.
  3. Support the process of creating age-friendly communities.
  4. Examine trends in particular municipalities by conducting follow-up studies.

Last update – 28/02/2017