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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 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 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

BePaiD (Behaviour and Pain in Dementia) is a longitudinal cohort study of 230 people with dementia, aged over 70, admitted to hospital for acute medical illness, and assessed for BPSD and pain at admission and every 4 (+1) days until discharge. Other measures included length of stay, care quality indicators, adverse events and mortality.

The aim of the study is to define the prevalence of behavioural and psychological symptoms of dementia (BPSD) and explore their clinical associations, particularly with pain, BPSD encompasses a range of symptoms including agitation, aggression, delusions, hallucinations, depression and apathy.

Last update: 16/01/2017

The Millennium Cohort Study (MCS) is a multi-disciplinary research project following the lives of around 19,000 children born in the UK in 2000-01. It is the most recent of Britain’s world-renowned national longitudinal birth cohort studies. The study has been tracking the Millennium children through their early childhood years and plans to follow them into adulthood. It collects information on the childrens siblings and parents. MCS’s field of enquiry covers such diverse topics as parenting; childcare; school choice; child behaviour and cognitive development; child and parental health; parents employment and education; income and poverty; housing, neighbourhood and residential mobility; and social capital and ethnicity.

The children and families have been contacted 6 times since recruitment at ages nine months, 3, 5, 7, 11 & 14 years.

MCS is part of CLOSER (Cohort & Longitudinal Studies Enhancement Resources) which aims to maximise the use, value and impact of the UK’s longitudinal studies.

Last update: 16/01/2017

The OPDC Discovery cohort is a prospective, longitudinal study that has recruited patients with early idiopathic Parkinson Disease, healthy controls and participants at risk of PD. The study also includes participants with REM Sleep Behaviour Disorder. Over 1500 subjects have been recruited to the cohort, including 1087 people with Parkinson’s, 300 healthy controls, 111 First degree PD relatives and 151 PSG-diagnosed REM sleep behaviour disorder, thought to be ‘at-risk’ of developing future Parkinson’s. All patients have a clinical assessment repeated every eighteen months so we can better understand the progression of Parkinson’s over time. Over 500 patients have been seen for a second visit which has allowed us to identify some important differences in the way Parkinson’s progresses in different people.

Last update: 29/12/2016

The participants of the Lothian Birth Cohort 1936 were recruited to the project because they had taken part in the Scottish Mental Survey 1947. This followed the Scottish Mental Survey of 1932 from which the Lothian Birth Cohort 1921 was established.
The surveys had, respectively, tested the intelligence of almost every child born in 1921 or 1936 and attending school in Scotland in the month of June in those years. Tracing, recruiting and re-testing people who had taken part in the Surveys offered a rare opportunity to examine the distribution and causes of cognitive ageing across most of the human life course.

The LBC1936 began in 2004 and recruited 1091 of the 70,805 individuals who had taken part in the 1947 survey. The LBC1936 have been examined at mean ages of 70, 73, 76 and 79 years. The cohort has a wide range of variables: genome-wide genotyping, demographics, psycho-social and lifestyle factors, cognitive functions, medical history and examination, biomarkers (from blood and urine) and a detailed structural magnetic resonance imaging (MRI) brain scan.

Last update: 08/12/2016

The University of Michigan Health and Retirement Study (HRS) is a longitudinal panel study that surveys a representative sample of approximately 20,000 people in the United States.

Last update: 21/01/2017