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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

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 original purpose of the Add Health study was to help understand the causes of adolescent health and health behaviour with special emphasis on the effects of multiple contexts of adolescent life.

The cohort was then followed through their transition to adulthood and research turned to understanding the determinants and consequences of developmental and health trajectories from adolescence into adulthood.

Add Health combines longitudinal survey data on respondents social, economic, psychological and physical well-being with contextual data on the family, neighbourhood, community, school, friendships, peer groups, and romantic relationships, providing unique opportunities to study how social environments and behaviours in adolescence are linked to health and achievement outcomes in young adulthood. The fourth wave of interviews expanded the collection of biological data in Add Health to understand the social, behavioural, and biological linkages in health trajectories as the Add Health cohort ages through adulthood, and the fifth wave of data collection continues this biological data expansion (2016-2018).

Last update – 03/02/2017

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 Dunedin Multidisciplinary Health and Development Study (DMHDS) is an ongoing, longitudinal study of the health, development and well-being of a general sample of New Zealanders. They were studied at birth (1972-73), followed up and assessed at the age of three when the longitudinal study was established. Since then they have been assessed every two years until the age of 15, then at ages 18 (1990-91), 21 (1993-94), 26 (1998-99), 32 (2003-2005), and 38 (2010-2012). It is planned to next see the Study members at age 44/45 and beyond.

Last update – 31/01/2017

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

The HCS is a population-based cohort study established to assess factors important in the health, well-being, social functioning and economic consequences of ageing. The participants included community-dwelling men and women aged 55-85 years of age who reside in Newcastle, New South Wales (NSW), Australia. They were randomly selected from the NSW State electoral roll and contacted between December 2004 and December 2007.

The participants’ study data was collected through self-report postal questionnaires which covered a wide range of variables but also linked with local and national health information databases and hospital records. These provided follow-up on use of prescription medication, health service utilization and hospitalizations, morbidity and mortality. There was also a baseline clinic visit which measured a wide variety of parameters including hearing, vision, smell, balance, cognition, and lung function. Medications and diagnoses have been collected not only at baseline but also at periodic intervals during follow-up.

Last update – 31/01/2017

The first wave of the MIDUS study collected survey data from a total of 7,108 participants. The baseline sample was comprised of individuals from four subsamples:

a national RDD (random digit dialing) sample (n=3,487);
oversamples from five metropolitan areas in the U.S. (n=757)
siblings of individuals from the RDD sample (n=950); and (4) a national RDD sample of twin pairs (n=1,914).

All eligible participants were non-institutionalized, English-speaking adults in the coterminous United States, aged 25 to 74. Data from the above samples were collected primarily in 1995/96.

Last update – 03/02/2017

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