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The rpAD study is a longitudinal study, which recruits patients from the entire federal territory. In addition, patients from the Clinical Dementia Centre are recruited at the Neurological and Psychiatric Clinic of the University Medical Center of G’ttingen, with these usually classical clinical forms being internal controls. The aim of the study is to characterize the biological factors and parameters that define the disease progression in AD.

After the patient is informed and consent is given, the inclusion examination is carried out. It includes a detailed history and anamnesis as well as a physical examination, which includes an in-depth examination of the neurological status. A neuropsychological test for cognitive testing is performed using the CERAD-plus test battery. Furthermore, the GDS score is obtained, which allows an assessment of the severity of the cognitive deficits by means of a 7-stage classification. The ADL score is used to assess the activities of daily life (Lawton and Brody 1969).

Six months after the initial examination, a telephone follow-up is carried out. Further investigations are carried out on an annual basis and correspond to the initial examination.

Last Update 21/09/2017

The aim of the Alfa Study is to focus on the processes taking place before the initiation of Alzheimer’s symptoms in order to design interventions to prevent or delay the onset of dementia. Inclusion criteria were being cognitively normal Spanish and/or Catalan-speaking persons aged between 45 and 74 years that agreed with the study procedures and tests: clinical interview and questionnaires associated to risk factors, cognitive tests, a blood sample extraction for DNA analysis, and MRI.

A subset (n=450) of the ALFA parent cohort participants are currently being recruited / undergoing a nested longitudinal long-term study, named the ALFA+ study, in which a more detailed phenotyping will be performed. On top of a similar characterization as in the ALFA parent cohort, it will entail the acquisition of both wet (CSF, blood, and urine sample collection) and imaging (magnetic resonance imaging [MRI] and PET) biomarkers. Furthermore, ALFA parent cohort participants may also be invited to participate in other BBRC studies such the ALFAlife primary intervention study (n=400) or the full genetic and neuroimaging characterisation study referred to as ALFAgenetics (n=2000).

Last Update 21/09/2017

The Northern Finland Birth Cohort Studies is an epidemiological and longitudinal research program which aims to promote health and well-being of the population. The prospective data collected from the Northern Finland forms a unique resource, allowing to study the emergence of diseases which can be based on genetic, biological, social or behavioural risk factors.

NFBC includes two longitudinal and prospective birth cohorts of women and offspring collected at 20-year intervals from the same provinces of Oulu and Lapland: The NFBC1966 was set with an expected date of birth in 1966, comprising of 12,068 mothers and 12,231 children (prospective data collection from maternity cards since 16th gestational week on average), and the NFBC1986 with an expected date of birth between July, 1st 1985 and June, 30th 1986, comprising 9,362 mothers and 9,479 children (prospective data collection from 10th gestational week).

Last update – 02/05/2017

The Norwegian ParkWest study is a prospective population-based longitudinal cohort study of patients with incident Parkinson’s Disease in Western and Southern Norway, with a total base population of more than 1 million inhabitants. The initial cohort comprised of 212 newly-diagnosed and drug-naïve individuals with suspected Parkinson’s disease, who were followed with standardized clinical examinations every 6 months. More comprehensive assessments, including neuropsychological and behavioural evaluations, were conducted at baseline and 1-year of follow-up, and at 2-year intervals thereafter. Currently, study participants are in the 10th year of follow-up. About 110 patients are still in the study.

Last update – 10/04/2017

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 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

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

The AMPLE study has been set up to investigate differences and outcomes in those with Lewy body dementia with and without concurrent Alzheimer’s disease/pathology. The principle aim of AMPLE is to undertake amyloid PET imaging in Lewy Body Dementia (LBD) and Alzheimer’s disease (AD) of 80 participants over the age of 60 and investigate the distribution of amyloid burden in LBD relative to AD and controls at baseline. A further aim is to determine the relationship between amyloid levels at baseline, clinical features of the disease, other imaging changes and subsequent clinical course in follow up.

Primary analysis would divide LBD patients into high and low amyloid burden with participants then compared on clinical features with AD-like symptoms and cognitive profiles. Follow up will be completed annually through surveys and clinical examinations.

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 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