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The aim of the study was to determine the incidence of Parkinson’s disease and other degenerative / vascular parkinsonian disorders in a defined geographical area in the North-East of Scotland and to describe the long-term prognosis of patients and carers in an incident cohort compared to age-sex matched community controls.

Ascertainment:

Referrals from GPs
Referrals from hospital consultants
Hand-searching referral letters (neurology & DOME)
Electronic searching (GP, hospital discharge data)
Screening over 65 and over 75’s

Annual follow-up plus linked to death register.

Last update – 08/03/2017

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

ADNI began in October 2004. The overall goal is to validate biomarkers for Alzheimer’s disease clinical trials. One aim is to find, validate and standardize more sensitive and accurate methods to detect Alzheimer’s disease at earlier stages and mark its progress through biomarkers. The study gathered and analyzed thousands of brain scans, genetic profiles, and biomarkers in blood and cerebrospinal fluid that are used to measure the progress of disease or the effects of treatment. More information on ADNI-info.org. All data is publically available at USC/LONI/ADNI.

The three overarching longitudinal ADNI study goals are:

Validation of biomarkers, especially for amyloid and tau, for use in AD clinical trials.
To detect Alzheimer’s disease (AD) at the earliest stage possible and identify ways to track the disease through biomarkers.
To support advances in AD intervention, prevention and treatment through the application of new diagnostic methods to apply at the earliest stages technically possible – when intervention may be most effective.
To continually develop ADNI’s now- legendary data access policy and continuously improve and expand the unprecedented data sharing model.

Last update – 07/02/2017

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), 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

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 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 Cambridge City over-75s Cohort Study (CC75C) is a long-term follow-up study of a representative population-based sample of older people which started in 1985 from a survey of over 2,600 men and women aged 75 and above. Through a series of interviews and assessments spanning almost three decades they have contributed to one of the largest and longest-running longitudinal observational studies of ageing into older old age.
The initial study targeted all men and women aged 75 or older who were registered within a selection of geographically and socially representative general practices in Cambridge, and achieved a 95% response rate in six of the seven practices. From this original survey of 2610 people, 2166 individuals form the baseline sample for the longitudinal cohort. This group has been followed up through ten surveys, with sub-groups assessed more often. Similarly high response rates amongst participants still alive in their late 80s or 90s, and even amongst centenarians, have built an extensive resource of quantitative and qualitative data contributed by a representative sample of very old people and their relatives.
The focus in later years shifted to quality of life issues of ‘older old’ people near the end of life for which we have been interviewing relatives or carers of surviving members of the cohort all aged 95 or more, as well as these study participants themselves.

Last update: 05/01//2017

The NSHD has informed UK health care, education and social policy for more than 70 years and is the oldest and longest running of the British birth cohort studies. Today, with study members in their seventies, the NSHD offers a unique opportunity to explore the long-term biological and social processes of ageing and how ageing is affected by factors acting across the whole of life. From an initial maternity survey of 13,687 of all births recorded in England, Scotland and Wales during one week of March, 1946, a socially stratified sample of 5,362 singleton babies born to married parents was selected for follow-up. This sample comprises the NSHD cohort and participants have been studied 24 times throughout their life.

During their childhood, the main aim of the NSHD was to investigate how the environment at home and at school affected physical and mental development and educational attainment. During adulthood, the main aim was to investigate how childhood health and development and lifetime social circumstances affected their adult health and function and how these change with age.

Now, as participants reach retirement, the research team is developing the NSHD into a life course study of ageing. Study members completed a postal questionnaire in 2014 and participated in a home visit in 2015/16, where data on health, lifestyle and life circumstances as well as obtaining repeat physical and cognitive measurements were collected. Over the past two years, a subset of 500 study members were invited to participate in a neuroimaging sub-study and over the next two years they will be recalled for a follow-up. This study will be conducted in collaboration with the Institute of Neurology, UCL.

NSHD is part of CLOSER (Cohort & Longitudinal Studies Enhancement Resources) which aims to maximise the use, value and impact of the UK’s longitudinal studies.
NSHD is part of the Dementias Platform UK (DPUK), a multi-million pound public-private partnership to accelerate progress in dementias research http://www.mrc.ac.uk/research/facilities/dementias-platform-uk

Last update: 19/12/2016

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