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The Vallecas Project is developed in the Research Unit of the Alzheimer’s Center of the Reina Sofía Foundation by researchers of the CIEN Foundation. Its main objective is to determine a probabilistic algorithm for the identification of individuals at risk of dementia type Alzheimer’s disease (AD) in the course of a few years. This algorithm will be based on the combination of sociodemographic, clinical, neurological, neuropsychological, biological (from blood determinations) and neuroimaging (various 3 Tesla magnetic resonance modalities).

The recruitment phase of the Vallecas Project participants was extended from October 2011 to December 2013. Finally, a total of 1,213 volunteers aged between 70 and 85 and of both sexes were initially evaluated. Once included in the study, it is monitored annually for 5 years in order to assess the evolutionary profile of all participants, specifically identifying those who develop cognitive impairment and / or dementia. The cohort is being followed up annually for 4 years after the baseline.

The Mayo Clinic Study of Aging was designed to establish a prospective population-based cohort of subjects to study prevalence, incidence and risk factors for MCI and dementia. The study was conducted in Olmsted County, where several factors enhance the feasibility of population-based epidemiologic research. Most residents seek care within the community from essentially 2 providers, the Mayo Clinic and Olmsted Medical Center, along with their affiliated hospitals and medical facilities within the county. Both healthcare providers use a unit medical record which includes all outpatient and inpatient information for each patient. The study began October 1, 2004, and recruitment is ongoing to maintain a sample size of about 3,000 active participants. Participants are randomly selected from the Olmsted County population using a sex and age-stratified sampling scheme. Selected participants are invited to participate; exclusion criteria are persons who are in hospice or terminally ill or demented, but recruitment of persons with dementia began in 2015. Nearly 6,000 participants have been recruited to date. At the onset of the study, only 70-89 year olds were eligible. Recruitment of 50-69 year-olds began in 2012, and recruitment of 30-49 year olds began in 2014. Followup is performed every 15 months for 50 yrs and older; every 30 months if younger than 50 years by face-to-face visits in the Center, in-home, or by phone for a minority who decline either of the two but still would like to participate. Medical records are reviewed is used to identify prevalent and incident medical conditions (e.g. vascular diseases such as diabetes, hypertension) and incident dementia cases among persons lost to follow-up.

The Lifelines Cohort Study is a large population-based cohort study and biobank that was established as a resource for research on complex interactions between environmental, phenotypic and genomic factors in the development of chronic diseases and healthy ageing. The Lifelines cohort distinguishes a children’s cohort (aged 0-18), an adult cohort (aged 18-65) and the elderly cohort (aged 65+). The protocol for these three sub-cohorts is largely the same, but focuses in part on the characteristics of the specific participant groups.

Between 2006 and 2013, inhabitants of the northern part of The Netherlands and their families were invited to participate, thereby contributing to a three-generation design. Follow-up visits are scheduled every 5 years, and in between participants receive follow-up questionnaires. Linkage is being established with medical registries and environmental data. Lifelines contains information on biochemistry, medical history, psychosocial characteristics, lifestyle and more. Genomic data are available including genome-wide genetic data of 15638 participants. Fasting blood and 24-h urine samples are processed on the day of collection and stored at -80 °C in a fully automated storage facility. The aim of Lifelines is to be a resource for the national and international scientific community. Requests for data and biomaterials can be submitted to the Lifelines Research Office ([email protected]).

The Lifelines Cohort Study is a large population-based cohort study and biobank that was established as a resource for research on complex interactions between environmental, phenotypic and genomic factors in the development of chronic diseases and healthy ageing. The Lifelines cohort distinguishes a children’s cohort (aged 0-18), an adult cohort (aged 18-65) and the elderly cohort (aged 65+). The protocol for these three sub-cohorts is largely the same, but focuses in part on the characteristics of the specific participant groups.

Between 2006 and 2013, inhabitants of the northern part of The Netherlands and their families were invited to participate, thereby contributing to a three-generation design. Follow-up visits are scheduled every 5 years, and in between participants receive follow-up questionnaires. Linkage is being established with medical registries and environmental data. Lifelines contains information on biochemistry, medical history, psychosocial characteristics, lifestyle and more. Genomic data are available including genome-wide genetic data of 15638 participants. Fasting blood and 24-h urine samples are processed on the day of collection and stored at -80 °C in a fully automated storage facility. The aim of Lifelines is to be a resource for the national and international scientific community. Requests for data and biomaterials can be submitted to the Lifelines Research Office ([email protected]).

This project comprises of two complementary parts. One part is aimed at the development of innovative diagnostic techniques to detect molecular signatures of AD based on disturbances of amyloid metabolism and glutamate neurotransmission. In this part, the focus is on the two most promising diagnostic approaches in AD: (molecular) imaging techniques and molecular diagnostic tests of CSF. In the second part of this study, techniques for which proof-of-concept has been found in humans are applied in a large group of AD patients. These patients are recruited in an established network of 4 collaborating memory clinics in The Netherlands, which use a standardized diagnostic protocol and share an extensive common database. Furthermore, more mature molecular, structural, and functional imaging and molecular diagnostic CSF techniques as well as the conventional diagnostic work-up will be applied from the start of the study in patients from the same network of memory clinics.

The Open Access Series of Imaging Studies (OASIS) is a project aimed at making MRI data sets of the brain freely available to the scientific community.

OASIS: Cross-sectional MRI Data in Young, Middle Aged, Nondemented and Demented Older Adults
This set consists of a cross-sectional collection of 416 subjects aged 18 to 96. For each subject, 3 or 4 individual T1-weighted MRI scans obtained in single scan sessions are included. The subjects are all right-handed and include both men and women. 100 of the included subjects over the age of 60 have been clinically diagnosed with very mild to moderate Alzheimer’s disease (AD). Additionally, a reliability data set is included containing 20 nondemented subjects imaged on a subsequent visit within 90 days of their initial session.

OASIS: Longitudinal MRI Data in Nondemented and Demented Older Adults
This set consists of a longitudinal collection of 150 subjects aged 60 to 96. Each subject was scanned on two or more visits, separated by at least one year for a total of 373 imaging sessions. For each subject, 3 or 4 individual T1-weighted MRI scans obtained in single scan sessions are included. The subjects are all right-handed and include both men and women. 72 of the subjects were characterized as nondemented throughout the study. 64 of the included subjects were characterized as demented at the time of their initial visits and remained so for subsequent scans, including 51 individuals with mild to moderate Alzheimer’s disease. Another 14 subjects were characterized as nondemented at the time of their initial visit and were subsequently characterized as demented at a later visit.

Last Update 21/09/2017

To investigate factors that are relevant to maintain functional competence, to prevent long-term disability and to minimise unnecessary service utilisation among older people. (1) Therefore, periodic assessments are performed covering information on functional status (ROBUST, postROBUST, preFRAIL, FRAIL according tio LUCAS Functional Ability Index; Dapp U et al. BMC Geriatr 2014;14:141.), health behaviour, health care use, the need of long-term care, and survival over a period of more than 10 years. (2) Long-term effects of randomised (RCT) health promotion intervention will be evaluated (Dapp U et al. Draft for Dtsch Arztebl Int 2017; Neumann L et al. J Nutr Health Aging 2017;doi:10.1007/s12603-017-0932-1). There were two approaches (a) small group sessions モActive health promotion in old ageヤ (Dapp U et al. J Gerontol A Biol Sci Med Sci 2011;66:591-8.), and (b)
home visits (Pr’fener F Z Gerontol Geriatr 2016;49:596-605).

3,326 independently living community-dwelling elderly people (60 years and over) were recruited from 21 general practices in 2000 (baseline). They were followed up over a ten year period until 2010 resulting in multidimensional data sets for every single participant at baseline, 1 year, 7 year and 9 year follow up (Dapp U et al. BMC Geriatr 2012 Jul 9;12:35.).

Last Update 21/09/2017

Dementia with Lewy Bodies (DLB) is the second most common cause of neurodegenerative dementia in older people. The aim of LewyPro is to examine and characterise symptoms and brain changes during the prodromal period of LBD. Earlier diagnosis is important because it facilitates care planning, leads to earlier treatment of cognitive symptoms and enables earlier identification of other symptoms, including parkinsonism.

Lewy Pro is recruiting a group of people with mild cognitive impairment (MCI) and prodromal symptoms suggestive of Dementia with Lewy Bodies (DLB) and following them up annually to assess biomarker changes and clinical course. The initial assessment will include a detailed clinical assessment, a blood sample, a lumbar puncture for cerebrospinal fluid, and a DaTSCAN.

Last Update 21/09/2017

Next Steps (previously known as the Longitudinal Study of Young People in England – LSYPE) is a major innovative cohort study of young people. The study began in 2004 and included all young people in Year 9, aged between 13 and 14, who attended state and independent schools in England.

Next Steps is one of the main information sources for the formation and appraisal of policies relating to young people and will continue to be so for at least the next 10 years. The baseline data will be used to monitor the progress of the cohort group, evaluate the success of policies aimed at this group and provide an evidence base for further policy development. The study brings together data from a wide range of sources and reflects the variety of influences on learning and progression.

Following the initial survey at age 13-14, the cohort members were visited every year until 2010, when they were age 19-20. Young people were interviewed along with their parents up to sweep 4 (age 17).

The most recent survey took place in 2015/16, when the cohort members were 25 years old. It maintained the strong focus on education, but the content was broadened to become a more multi-disciplinary research resource. Data was collected about cohort members’ housing and family life, employment and economic circumstances, education and job training, physical and emotional health, and identity and participation. A wide range of administrative data linkage consents were collected in the domains of health, education, economics and criminal behaviour.

Last Update 21/09/2017

AIBL is a study of over 2,000 people assessed over a long period of time (over 10 years) to determine which biomarkers, cognitive characteristics, and health and lifestyle factors determine subsequent development of symptomatic Alzheimer’s Disease (AD).

The baseline inception cohort consisted of:
i. 211 individuals with AD as defined by NINCDS-ADRDA (McKhann et al, 1984);
ii. 133 individuals with Mild Cognitive Impairment (MCI)
iii. 768 healthy individuals without cognitive impairment. This group included volunteers with at least one copy of the ApoE ?4 allele, volunteers without a copy of the ApoE ?4 allele and 396 volunteers who expressed subjective concern about their memory function.

The enrichment cohort consists of:
i. 142 individuals with AD
ii. 220 individuals with MCI
iii. 582 individuals with without cognitive impairment.

The data was collected through clinics and questionnaires.

Last Update 21/09/2017