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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.

LEILA75+ is a prospective population-based cohort study on the epidemiology of dementia and other neurodegenerative disorders. The main aims of the study included to determine a) the prevalence and incidence of dementia as well as subtypes of dementia, b) the prevalence and incidence of mild cognitive impairment (MCI) and c) the occurrence of other related conditions, such as subjective cognitive decline (SCD). Likewise, it was aimed at identifying risk factors and groups of high-risk-individuals for the development of dementia, MCI and SCD.

Overall, 1,692 individuals of at least 75 years of age (from private households as well as from institutions) were approached via random selection from the registry office of the city of Leipzig (response rate: 81%). Finally, the LEILA75+ cohort consisted of 1,265 individuals at baseline. Data collection took place at participants homes through structured interviews (incl. socio-demographic variables, a cognitive test battery/SIDAM, functional and psychosocial assessments, medical conditions). If participants’ were not able to complete assessments, proxy information was gathers from relatives. After baseline assessment in 1997/1998, 5 follow-up waves were conducted every 1.5 years. Additionally, a long-term follow-up was performed 15 years after baseline.

Further study details have been published in:
Riedel-Heller SG, Busse A, Aurich C, Matschinger H, Angermeyer MC. Prevalence of dementia according to DSM-III-R and ICD-10: results of the Leipzig Longitudinal Study of the Aged (LEILA75+) Part 1. British Journal of Psychiatry 2001; 179: 250-254.

Riedel-Heller SG, Busse A, Aurich C, Matschinger H, Angermeyer MC. Incidence of dementia according to DSM-III-R and ICD-10: results of the Leipzig Longitudinal Study of the Aged (LEILA75+), Part 2. British Journal of Psychiatry 2001; 179: 255-260.

Riedel-Heller S, G, Schork A, Matschinger H, Angermeyer M, C, Recruitment Procedures and Their Impact on the Prevalence of Dementia. Neuroepidemiology 2000;19:130-140.

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 Health 2000 Survey, carried out in 2000-2001 in Finland, was coordinated by the National Institute for Health and Welfare, THL (the former National Public Health Institute) in co-operation with an extensive network of organizations and experts. The aim of the survey was to provide information on major public health problems, their causes and treatment, health service needs and utilization as well as functional and working capacity. The data for the survey were collected in comprehensive health examination including blood sampling, in interviews and in self-administered questionnaires. The nationally representative sample included 8,028 persons aged 30 or over of whom 85% participated in the health examination conducted at 80 areas in the mainland Finland. In addition, 1,894 young adults (18-29 years) were invited to the health interview and fill in the questionnaire. Further, 1,278 people who had taken part in Mini-Finland Health Survey carried out in 1978-1980 were invited to the re-examination.

The follow-up of the Health 2000 Survey, the Health 2011 Survey, was carried out in 2011-2012. All members of the Health 2000 sample (n=8,135), who were living in Finland in 2011 and had not refused requests to be invited to further studies, were invited to the Health 2011 Survey. In 2011, they were at least 29 years of age. A total of 59% of them participated in the health examination conducted at 59 areas in Finland. In addition, a new random sample of young adults (aged 18-28, n=1,994) was taken. A total of 415 of them were invited to the health examination and the rest of them (1,579) received only the postal questionnaire. Further, 920 people who had previously taken part in the Mini-Finland Health Survey and invited to re-examination in 2001 were invited.

The Health 2000/2011 cohort is also continuously followed-up by linkage to Finnish nationwide registers.

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

Current evidence on older adults is derived from population-based cohort studies and randomized controlled trials, which may not include frail individuals. Data are lacking on older outpatients, a potentially diverse population. To bridge the gap between current evidence and clinical practice needs, the Milan Geriatrics 75+ Cohort Study was designed as an observational hospital-based outpatient cohort study. This study included 1861 new consecutive outpatients aged ?75 years who attended a first comprehensive visit at the Geriatric Unit of ‘I.R.C.C.S. Ca’ Granda’ in Milan, Italy, in the period between January 3, 2000 and March 25, 2004. These participants routinely underwent an extensive standardized structured medical examination and comprehensive geriatric assessment with trained physicians. At baseline, data were collected on reason for referral, demographics, physiological anamnesis, past and present medical history and medication use. Moreover, medical examination and anthropometric measurements were performed. Cognitive function was assessed using the 30-item Mini-Mental State Examination (MMSE). Functional status was evaluated using Katz’ Activities of Daily Living (ADL) and Lawton’ Instrumental Activities of Daily Living (IADL) questionnaires. At 10-year follow-up, all-cause mortality was assessed by collecting data from the Register Office of Milan or other town of residence.

Last Update 21/09/2017

The CARTaGENE (CaG) study is both a population-based biobank and the largest ongoing prospective health study of men and women in Quebec. CaG targeted the segment of the population that is most at risk of developing chronic disorders, that is 40-69 years of age, from six census metropolitan areas in Quebec. The sampling was stratified by age, sex and postal groups and is proportional to the density of the population in these areas. Over 43,000 participants consented to visiting 1 of 12 assessment sites where detailed health and socio-demographic information, physiological measures and biological samples (blood, serum and urine) were captured. Participants are followed-up based on linkage to governmental health administrative databases and direct reassessment through a web portal.

Last update 21/09/2017

All people aged 65-84 listed in the population registers of the 12 Italian participating towns as resident and alive on the 31.12.2002. The community based random sample was stratified by gender and 5-year age classes following an equal allocation strategy.

The general objective of IPREA-FU is to improve the evidence base on the preclinical phase of dementia, providing a better insight into its heterogeneous evolution.

Last Update 21/09/2017

The aim of GS: SFHS is to establish a large, family-based intensively-phenotyped cohort recruited from the general population across Scotland, as a resource for studying the genetics of health areas of current and projected public health importance. It aims to identify genetic variants accounting for variation in levels of quantitative traits underlying the major common complex diseases (such as cardiovascular disease, cognitive decline, mental illness) in Scotland.

Baseline data was collected at a single clinic visit. Longitudinal data is available by linkage to NHS medical records. Some participants are being invited to new clinic visits in 2015-17. This profile also includes scanning information from the Stratifying Resilience and Depression Longitudinally (STRADL) study to which approximately 1500 GS participants are being invited for scanning.

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