The Parkinson’s Progression Marker Initiative (PPMI) is an observational, international study designed to establish biomarker defined cohorts and identify clinical, imaging, genetic and biospecimen Parkinson’s disease (PD) progression markers to accelerate disease modifying therapeutic trials. A total of 423 untreated PD, 196 Healthy Control (HC), 64 SWEDD (scans without evidence of dopaminergic deficit) subjects, and 65 Prodromal subjects (individuals with hyposmia or REM Sleep Behavior Disorder) were enrolled. PPMI is actively enrolling affected and unaffected individuals with genetic mutations in LRRK2, GBA, or SNCA through the end of 2018. For the most up to date enrollment numbers, please visit http://www.ppmi-info.org/study-design/study-cohorts/. To enroll PD subjects as early as possible following diagnosis, subjects were eligible with only asymmetric bradykinesia or tremor plus a dopamine transporter (DAT) binding deficit on SPECT imaging. Acquisition of data was standardized as detailed at www.ppmi-info.org.
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The purpose of this project is to describe changes in health and functioning among older people. Living conditions and life-style are studied as predictors of health, functioning, need of care and mortality. This multidisciplinary study includes several prospective arms. In 1988 a random sample of people aged 65-84 years were interviewed in their homes. Follow up interviews for them were conducted in 1996 and 2004. During the same years 65-69 year old people were interviewed to capture cohort changes in aging. In 1989 all men born before 1924 and every other woman living in nursing home were interviewed. In 1989 all 75-year-old and 1990 all 80-year-old residents of Jyväskylä were studied in the laboratory with extensive functional testing and clinical examinations. The 75-year-old people were followed up after 5, 10 and 15 years and the 80-year-olds after 5 and 10 years. In addition, register-based data on hospital and long-term care is being updated until the entire cohort becomes extinct. Altogether, 2500 have participated in these studies.
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.
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.
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.
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 Vitality 90+ Study (in Finnish: Tervaskannot 90+) is a multidisciplinary project focusing on longevity and the oldest-old. The sub-projects address the biological basis of aging, predictors of health, functioning and longevity, old age as an individual experience, and the need for and use of care and services. The research is motivated by the rapid changes in the population structure and by the increase in real longevity.
Data was collected through mailed surveys with whole cohorts of people aged 90+ in Tampere, face-to-face interviews and performance tests and blood samples. The mailed surveys were conducted with all community-dwelling people in 1996 and 1998, and with both community-dwelling and institutionalized people four times since 2001.
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