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.
ILSE is an interdisciplinary longitudinal study that offers the opportunity to analyze inter- and intra-individual differences and changes over the life-span as well as relations between environmental factors, behavioral aspects, life-events, health behaviors, mental and physical health and well-being. The bio-graphical approach pursued by the ILSE-study is based on the assumption that the quality of developmental experiences in early life-phases influence the performance and possibilities of adaptation in later life in a unique way.
At the first measurement point, the ILSE sample consisted of 1390 persons from East (re-search centres: Leipzig and Rostock) and West Germany (research centres: Heidelberg, Bonn and Erlangen-Nuremberg). Stratified by sex and cohort membership (born 1930-32 and 1950-52, respectively) the representative ILSE-sample was examined by a interdisciplinary research team. The first round of data collection was conducted between 1993 and 1996, the second round with n = 994 participants from the data collection centres Heidelberg, Leipzig und Rostock (return rate = 90%) was conducted between 1997 and 2000. The third round of data collection which started in January 2005 ended in 2007. A fourth wave was conducted and completed between 2014 and 2016
The LRRK2 Cohort Consortium (LCC) comprises three closed studies: the LRRK2 Cross-sectional Study, LRRK2 Longitudinal Study and the 23andMe Blood Collection Study. The LCC followed standardized data acquisition protocols, and clinical data and biological samples are stored in a comprehensive Parkinson’s database and biorepository, respectively. A total of 1,213 Idiopathic PD subjects, 1,168 PD subjects with genetic mutations in LRRK2, 1,123 unaffected subjects with genetic mutations in LRRK2, and 779 Healthy Controls (HC) were recruited.
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.
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
The EADC-PET project (EAPP, The European Alzheimer’s Disease Consortium PET project) is a spontaneous multicentric study (ProtocolDraftSep2008; ProtocolDraftFeb2009) involving at the moment five Centres in four Countries (CENTRES), belonging to the EADC consortium. It was launched during the EADC meeting in Amsterdam, during fall 2007, by Flavio Nobili (Genoa) who is the Principal Investigator.
The project aims at sharing FDG-PET, MRI, neuropsychological, genetic, EEG and clinical information of patients with amnestic Mild Cognitive Impairment (aMCI) and matched healthy controls. Information is uploaded in a safe FTP facility on the server of University of Genoa. Username and password have been provided to all participants. Use of data is regulated by a ‘Confidentiality Disclosure Agreement’ that can be downloaded from this web site (Confidential_Disclosure_Agreement). The Centres propose original studies by sending a formal proposal to all participants who can agree or disagree, or propose modifications/suggestions to the original proposal.
The objective is to follow-up aMCI patients with clinical and neuropsychological examinations to pick up conversion to Alzheimer’s dementia or to other forms of dementia. FDG-PET can be analyzed by means of several post-processing strategies to highlight glucose metabolic information and to identify the characteristics of what is today called ‘prodromal’ AD.
Last Update 21/09/2017
STROKOG is a consortium of longitudinal studies of cognitive disorders following stroke, TIA or small vessel disease. Developed under the auspices of VASCOG (Society for the Study of Vascular Cognitive and Behavioural Disorders), it is the first international effort to harmonise work on post-stroke dementia and is being led by CHeBA researchers.
The consortium brings together studies that have examined post-stroke or other high vascular risk cohorts longitudinally, with cognitive decline and dementia (including sub-types) as primary outcome variables. The included studies (N=27; total sample of more than 10,000 individuals, representing 17 countries) have rich neuropsychological and MRI data, and some recent studies (n=3) have included amyloid imaging in sub-samples. A number of studies have CSF and/or plasma available for biomarker studies, and participant enrolment in brain banks for neuropathology.
Last Update 21/09/2017
KORA stands for “Kooperative Gesundheitsforschung in der Region Augsburg” (Cooperative Health Research in the Augsburg Region). KORA studies are conducted at regular intervals in order to assess the health status of the population in Augsburg and the surrounding area since 1984. The extensive database and biological specimen repository provide an excellent platform for national and international health research. More than 200 research projects a year are conducted with regional, national and international partners. To date, more than 2,000 publications have been issued. The main research areas are:
– Lifestyle and environmental factors as risk factors in the development of chronic diseases
– Identifying new genes for the most important chronic diseases and related risk factors
– Integrating research into risk factors and functional genomics
– Research on health systems: usage, costs and health status
Last Update 21/09/2017
The German Study on Ageing, Cognition, and Dementia (AgeCoDe) in primary care patients is an ongoing multicenter prospective study in elderly individuals with a focus on the identification of risk factors and predictors of cognitive decline and dementia.
Between January 1, 2003 and November 30, 2004 a total of 3327 subjects free of dementia at baseline were recruited from general practitioner (GP) registries and assessed with structured clinical interviews and cognitive tests. Since then, participants as well as their proxies were interviewed by trained staff every 1.5 years. In 2016 follow-up 9 was completed.
Main inclusion criteria were ages greater than 75 years, native German language, absence of severe hearing or vision impairments, and residing at home rather than in an institution.
The approval of this study was provided by the local ethics committees of the Universities of Bonn, Hamburg, D’sseldorf, Heidelberg/Mannheim, Leipzig, and Munich. All subjects gave written informed consent before the participation in this study.
Of the 3,327 patients interviewed at baseline, 84.8% (n = 2,820) could be personally interviewed 1.5 years later and 73.9% (n = 2,460) 3 years later. For the vast majority of subjects who could not be personally interviewed, systematic assessments, focusing particularly on dementia, were obtained from GPs, relatives or caregivers.
Last Update 21/09/2017
The Rhineland Study is a prospective cohort study, which began in March 2016. It will include up to 30,000 participants from Bonn and asses their physical and mental health over their lifespan. The study is scheduled to run for decades and participants will be re-examined every 3-4 years.
As neurodegenerative diseases and their pathologies develop over a long time before first symptoms start to show, the Rhineland Study will include men and women aged 30 years and above regardless of their health status.
The main aims of the study are:
1. To investigate modifiable and non-modifiable causes of neurodegenerative and neuropsychiatric diseases
2. To find biomarkers/(multimodal) biomarker profiles to identify individuals at risk for neurodegenerative or neuropsychiatric disease, who might benefit from preventive interventions
3. To investigate (patho)physiology over the adult life course, with specific emphasis on brain-related outcomes.
Last Update 21/09/2017