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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

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

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

The PATH Through Life project is a 20 year longitudinal cohort study of 7,485 young (aged 20-24 at baseline), midlife (aged 40-44 at baseline) and older (aged 60-64 at baseline) adults randomly sampled from the electoral roll of the Australian Capital Territory and the nearby city of Queanbeyan.
The original aims of the project are outlined below.

  • To delineate the course of depression, anxiety, substance use and cognitive ability with increasing age across the adult life span.
  • To identify environmental risk, genetic risk and protective factors influencing individual differences in the course of these characteristics.
  • To investigate interrelationships over time between the three domains of: depression and anxiety, substance use, and cognitive ability and dementia.
  • Data collection has occurred at four intervals (4 waves), at approximately four year intervals with a good participant retention rate. The fifth wave of data collection is commencing in 2017.
    Several design features of the PATH project contribute to its unique standing among population based longitudinal cohort studies.
  • Obtaining measures of genetic, biological (including MRI), psychosocial and lifestyle risk and protective factors for mental health and wellbeing.
  • Use of a narrow age cohort design with longitudinal follow ups as an optimal means of separating age and cohort effects.
  • Assessment of participants across the full adult lifespan, permitting investigation of developmentally significant, but under studied periods such as midlife
  • Recruitment and follow up of a young-old population, providing important pre-clinical data for studying the development of age related changes in memory and cognition.

Last update – 12/01/2017

The PICNICS study is an observational study tracking the progression of patients with incident Parkinson’s disease over several years to better understand how the disease behaves over time, and establish the pattern of evolution of subtypes of Parkinson’s disease. Understanding differences between subtypes and what drives them will inform development of stratified therapies. The study recruited patients with Parkinson’s disease between 2008 and 2013, and is following them up every 18 months with clinical assessments, cognitive assessments and biological sampling.

Last update – 16/01/2017

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 Thai Cohort Study was established in 2005 in order to study the dynamics, drivers and impacts of the population transition from high maternal and child mortality and infectious disease to low mortality and chronic disease. We call this the ‘health-risk transition’ – synchronised change in causal risks and health outcomes affecting whole populations, with Thailand being a good example in the SE Asia region. This transition can be divided into overlapping or interacting component transitions such as the nutrition transition, the health system transition, sexual transition, the transport transition, the (formal) work transition and the environment transition (including urbanisation). As our understanding improves we are better able to inform governments about changing health service demands and changing prevention needs — with universal
health insurance and Thai obesity research being two prominent examples of national response.

Cohort members are distance-learning students who resided nationwide and were enrolled at the Sukhothai Thammathirat Open University when they responded to a 20-page baseline questionnaire in 2005 (n= 87,151). A four and eight year follow-up were conducted with a response rate of approximately 70% at each follow-up (n=60,569 in 2009 and n=42,785 in 2013). At 2005 baseline, median age was 29 years, roughly half the sample were females, and approximately half were urban residents.

For mortality data linkage, all cohort members have provided their Citizen ID number which was matched with death records from the Thai Ministry of Interior and subsequently linked with causes of death from the Ministry of Public Health. Up until November 2016, there were a total of 1,401 deaths among the Thai Cohort Study participants.

Last update: 22/01/2017

The major goals of this prospective cohort study of a randomly selected community sample are to: establish the prevalence and genetic, metabolic and environmental determinants of psychiatric disorders, cardiovascular risk factors (CVRF) and cardiovascular diseases (CVD) in the general population of the city of Lausanne; assess the mechanisms of the association between psychiatric disorders and CVRF / CVD.
Additional scientific questions focus on:

  • the identification of risk factors for the incidence and course of CVRF and psychiatric disorders;
    the identification of risk factors for cognitive impairment;
  • the testing of novel biological marker candidates and the incidence or course of CVRF/CVD or psychiatric disorders;
  • the testing of associations between brain anatomy patterns and CVRF and psychiatric disorders.

Last update: 19/12/2016

The Busselton Healthy Ageing Study aims to enhance understanding of ageing by relating the clustering and interactions of common chronic conditions in adults to function. Phase I (recruitment) is a cross-sectional community-based prospective cohort study involving 5,107 ‘Baby Boomers’ (born from 1946 to 1964) living in the Busselton Shire, Western Australia. The study protocol involves a detailed, self-administered health and risk factor questionnaire and a range of physical assessments including body composition and bone density measurements, cardiovascular profiling (blood pressure, ECG and brachial pulse wave velocity), retinal photography, tonometry, auto-refraction, spirometry and bronchodilator responsiveness, skin allergy prick tests, sleep apnoea screening, tympanometry and audiometry, grip strength, mobility, balance and leg extensor strength. Cognitive function and reserve, semantic memory, and pre-morbid intelligence are assessed. Phase 2 (longitudinal, 6 year follow-up) commenced in 2016.

Last update: 25/01/2017