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TRACK-HD was a prospective observational biomarker study in participants with premanifest and early Huntington’s disease (HD). Track-HD assessed longitudinal data collected at baseline, 12 months, 24 and 36 months at sites in Leiden (Netherlands), London (UK), Paris (France), and Vancouver (Canada). Participants were individuals without HD but carrying the mutant HTT gene (ie, premanifest HD), patients with early HD, and healthy control individuals matched by age and sex to the combined HD groups. Data were collected with 3T MRI, clinical, cognitive, quantitative motor, oculomotor, and neuropsychiatric assessments. TrackOn-HD followed on from TRACK-HD aiming to investigate compensatory mechanisms in premanifest gene carriers. Baseline, 12 and 24 month data was collected from the same four sites on premanifest gene carriers and healthy controls including 3T MRI, task and resting state fMRI, DTI, clinical, cognitive, quantitative motor and neuropsychiatric assessments.

Last update – 11/04/2017

This is the largest multi-centre study of ageing in men in the world and intends to identify the nature and frequency of some of the symptoms of ageing in men, the relationships between these symptoms to hormonal changes and other risk factors.

In total, 3369 men in 8 different countries in Europe are taking part in the study. These 8 centres are Manchester – UK, Malmo – Sweden, Tartu – Estonia, Lodz – Poland, Szeged – Hungary, Florence – Italy, Santiago de Compostela – Spain, Leuven – Belgium. In each centre, ~400 men aged between 40 and 79 years at the start of the study have been recruited. They will be followed up to look for future changes in their hormonal and general health status. The men will be investigated initially on two occasions, at the start and then ~5 years later. It is highly likely that the study will continue beyond 5 years and further testing will be organised subsequently. The aims of the study are to:

  1. Document geographical variations in the ageing-related involution decline of endocrine function in European men;
  2. Explain the variability in the rate of secular decline in endocrine functions on the basis of socio-demographic, lifestyle, co-morbid, ethnic/racial, or genetic factors;
  3. Predict the physical and psychological health status of individuals based on the variation in ageing-related endocrine decline and changes in body composition.

Last update – 24/04/2017

The CLSA will collect information on the changing biological, medical, psychological, social, lifestyle and economic aspects of people’s lives across Canada. These factors will be studied to understand how, individually and in combination, they have an impact in both maintaining health and in the development of disease and disability as people age

A total of 21,241 people from across Canada have agreed to take part in a telephone interview, once every three years.

An additional 30,097 people consented to participate in an in-home interview, and a visit to one of 11 Data Collection Sites across Canada where they take part in a range of physical assessments.

These participants were selected randomly, and were aged 45 to 85 when first contacted. The interviews and visits will take place once every three years over the 20-year course of the study

The study has entered its next phase where each individual recruited between 2010 and 2015 (baseline) will be re-contacted for the first follow-up. This will be conducted between 2015 and 2018. During this phase, the CLSA research team will collect the same type of information that was collected at baseline, along with several new measures that have been introduced.

Last update – 12/05/2017

The aim of RISCA is to answer the following questions:

  1. What is the incidence of disease manifestation in mutation carriers?
  2. Which clinical signs precede the onset of manifest ataxia in SCA1, SCA2, SCA3 and SCA6?
  3. What are the prevalence and incidence of preceding signs?
  4. Are the prevalence and incidence of preceding signs affected by genotype, gender, age, estimated time until disease manifestation and repeat length?
  5. Does the presence of certain preceding signs predict the manifestation of ataxia?
  6. Are there MRI alterations that precede the onset of ataxia?

Study participants are followed at 24 months intervals over six years and than at irregular intervals. At each visit, study participants are asked in a structured interview for a number of predefined clinical signs that potentially precede the onset of ataxia.

Last update – 26/05/2017 

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 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), Parkinson’s 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

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 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

CFAS Wales aims to interview a representative sample of 3,750 people aged 65 and over in two areas in Wales (Gwynedd and Swansea). Using established and standardised techniques it will collect data that will enable the investigation of cognitive impairment, depression, physical disability and healthy active life expectancy for the whole group and within social groups. It will provide a foundation for other collaborative studies that investigate biomarkers and other early indications of risk of cognitive decline, such as imaging. It will investigate factors that may delay the onset of dementia, specifically focussing on the role of bilingualism and social networks. As the participants reside in a bilingual area this is a key opportunity.

Last update – 13/02/2017

The overall goal was to establish a genetic-epidemiological database to shed light on the aging process among the extremely old, focusing on physical and cognitive functioning. In the first wave 2,262 Danes born in 1905 participated in a home-based 2-hour multidimensional interview, including cognitive and physical performance tests and collection of DNA, carried out by lay interviewers. Population-based registers were used to evaluate representativeness.

The first wave took place in 1998 and participants were followed-up in 2000 and 2003. In 2005 all the surviving birth cohort members were invited to participate irrespective of previous participation:

  • Wave 1: 2262 participants (1653 with biological sample)
  • Wave 2: 1086 participants
  • Wave 3: 437 participants
  • Wave 4: 256 participants

Last update – 30/01/2017