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.
Archives
The Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) is a large-scale, public health study involving a representative sample of men and women aged 50 years and over living in Northern Ireland.
The primary objective of NICOLA is to collect longitudinal multidisciplinary data across a wide range of domains to be used for investigation and research relevant to ageing and making Northern Ireland a better place to grow old in.
NICOLA collects extensive information on all aspects of health, social and economic circumstances of ~8500 men and women as they grow older in Northern Ireland over a series of data collection waves approximately every 2-3 years.
Longer term research goals will investigate the determinants of retirement behaviour and economic wellbeing, the impact of cognitive function and sensory disability on decision making, the determinants of disability trajectories, the influence of social participation on these and the interaction of genetic, biological and psychosocial determinants on health and mortality.
There has been one sweep of data collection (2013 2016) and a second is currently underway (2017 – )
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 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.
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.
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 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]).
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 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.