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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

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 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 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

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

In May 2006 a multidisciplinary team in the Institute for Ageing and Health at Newcastle University began a major groundbreaking study of the lives of those aged 85 years and older.
The study aimed to:

Assess, in great detail, the spectrum of health in the oldest old.
Examine the associations of health trajectories and outcomes with biological, clinical and social factors as the cohort ages.
Identify factors which contribute to the maintenance of health and independence.
Advance understanding of the biological nature of human ageing.

Eligible individuals will be all those who turn 85 during the year 2006 (i.e. born in 1921) and who are registered with a Newcastle or North Tyneside general practice. Participants will be visited in their current residence (own home or institution) by a research nurse at baseline, 18 months and 36 months. The assessment protocol entails a detailed multi-dimensional health assessment together with review of general practice medical records. Participants will be flagged with the NHS Central Register to provide details of the date and cause of death.

Last update: 17/01/2017

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 ICICLE-PD study aims to accurately characterise two independent cohorts of incident parkinsonism in Newcastle-Gateshead and Cambridgeshire. A key objective is to identify patients who develop Parkinson’s disease dementia (PDD) and the factors that predict its evolution. From this information, a simplified panel of tests that can be used to predict PDD will be established. ICICLE-PD will therefore provide a platform for studies investigating agents designed to help treat this complication of PD. Participants were recruited between June 2009 and March 2012. Longitudinal follow up is on going with assessments in person at 18-month intervals.

Last update: 16/01/2017

The Hertfordshire Cohort Study comprises a nationally unique study of 3000 men and women born during the period 1931-1939 and still resident in the English county of Hertfordshire. Information available on these individuals includes birthweight (recorded by the attending midwife), weight at age one year (recorded by a health visitor), the method of infant feeding, and details of childhood illnesses up to age five years. Follow-up of individuals began in 1990 and medical and social histories have been ascertained, as well as detailed anthropometry, blood pressure, glucose tolerance, fasting serum cholesterol and triglycerides, bone density and physical performance. DNA on all participants has been collected and is stored in the MRC Lifecourse Epidemiology Unit, University of Southampton, UK.

The entire cohort is being followed up through primary care and hospital records for clinical outcomes including incident coronary heart disease, cerebrovascular disease, chronic airflow obstruction and fracture. The cohort members are flagged with NHS Digital for notification of deaths.

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

Last update: 31/01/2017