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The aim of RISCA is to answer the following questions:

What is the incidence of disease manifestation in mutation carriers?
Which clinical signs precede the onset of manifest ataxia in SCA1, SCA2, SCA3 and SCA6?
What are the prevalence and incidence of preceding signs?
Are the prevalence and incidence of preceding signs affected by genotype, gender, age, estimated time until disease manifestation and repeat length?
Does the presence of certain preceding signs predict the manifestation of ataxia?
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 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

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

Aims & objective

To find out the known as well as some new factors which increase the risk of occurrence of stroke (half body paralysis, Lakwa) and of memory problem and other brain related problems.
To identify a group of apparently healthy people (50 years and above), carry out their health check up and follow them up over several years to detect any health problems (like heart attack, lakwa, memory problems) with increasing age.
To investigate the prevalence and incidence of and risk factors for stroke and cognitive decline in the elderly.

Updates about the health of the participants will be obtained from telephone follow-ups every six months and physical check-ups every three years. The study is expected to last for at least 10 years.

Last update – 02/02/2017

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

The DEAS is a nationwide representative survey of the German population aged 40 and older that combines cross-sectional and longitudinal samples. Participants from baseline samples (drawn every six years) are followed up and enter the different panel samples. Panel data was collected at the same time as baseline samples until 2008. Starting from 2011, panel samples are interviewed every three years. Thus, DEAS enables an analysis of social change using the cross-sectional data of 1996, 2002, 2008, and 2014, as well as an investigation of intra-individual development over three to eighteen years (1996-2002-2008-2011-2014).

Last update – 16/02/2017

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