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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 Swedish BioFINDER Study consists of four cohorts where patients are included prospectively and followed longitudinally (www.biofinder.se). At baseline, these individuals undergo detailed and standardized cognitive, neurological and psychiatric examinations. Plasma, blood, CSF and samples for cell biology studies are collected. Most also have also undergone advanced Magnetic Resonance Imaging, and in many of the non-demented cases Amyloid and Tau positron emission tomography (PET) imaging have also been done.

The subcohorts include:
i) Healthy volunteers. Ca 350 volunteers aged 60-100 years old from the population-based Malm’ EPIC cohort (380 participants as of Feb 2016). Follow-up time: at least 8 years with investigations repeated every second year. In this cohort, appr. 20% is expected to have preclinical AD.
ii) Patients with Mild Cognitive Impairment (MCI) or Subjective Cognitive Decline (SCD). Ca 500 patients with MCI/SCD aged 60-80 years. Follow-up time: at least 6 years with investigations repeated every year. In this cohort, appr. 50% is expected to have prodromal AD.
iii) Patients with different dementia disorders. We include ca 250 dementia cases aged 40-100 years with AD, VaD, DLB, PDD or FTD. Follow-up time: at least 2 years with investigations repeated every year.
IV) Patients with Parkinson’s disease (PD) and PD-related disorders. Ca 300 patients with Parkinson-like symptoms. Follow-up time: at least 6 years with investigations repeated every year.

Last Update 21/09/2017

The Wisconsin Longitudinal Study (WLS) is a longitudinal population cohort started in 1957, with a questionnaire administered to all Wisconsin High School seniors. In 1964, a randomly selected one-third of the members of the class of 1957 were followed up with a brief questionnaire to parents asking about their child’s post high-school education and occupation. Direct contact with the graduate began with a telephone interview in 1975, and subsequent telephone and mail surveys in 1993 2004. In 1977 a subset of graduate’s siblings were interviewed by phone and in 1995 and 2005 interviews were conducted with one sibling from each family whenever possible. Spouses of Graduates and Siblings who were married at the time of the 2004/2005 interview were also interviewed by phone. Most recently in-person interviews with a leave-behind questionnaire were administered in 2011 to both the graduate and sibling panels. Saliva was collected from both graduate and sibling participants via a mail-effort in 2008 and during the in-person 2011 interview.

Last Update 21/09/2017 

In this epidemiological study we examined the prevalence of medical comorbidity in elderly subjects with cognitive deficits and dementia. The ReGAl Project (Rete Geriatrica Alzheimer- Geriatric Network on Alzheimer’s disease) collected data in 33 Italian Geriatric memory clinics from January 2001 to December 2005. A total of 4,075 patient were recruited.

Last Update 21/09/2017

The ADC was setup in 2004 by including all patients who come to the Alzheimer Center for diagnostic work up and who consent to give all data, collected as part of the routine diagnostic work up, for research. The aim is and was to facilitate research into new and existing biomarkers in the broadest sense, to establish diagnostic, prognostic and theragnostic values and further insight into the pathogenesis of neurodegenerative dementias. The data are collected on a weekly basis and consist of baseline data and annual follow up data. Since it is conception it has grown into one of the largest clinical databases in the dementia field. More info on setup, characteristics and data collection can be found in van der Flier WM, Pijnenburg YA, Prins N, Lemstra AW, Bouwman FH, Teunissen CE, van Berckel BN, Stam CJ, Barkhof F, Visser PJ, van Egmond E, Scheltens P.

Optimizing patient care and research: the Amsterdam Dementia Cohort. J Alzheimers Dis. 2014;41(1):313-27. doi: 10.3233/JAD-132306. PubMed PMID: 24614907.

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

The Irish Longitudinal Study on Ageing (TILDA) is a large-scale, nationally representative, longitudinal study on ageing in Ireland, the overarching aim of which is to make Ireland the best place in the world to grow old.
TILDA collects information on all aspects of health, economic and social circumstances from people aged 50 and over in a series of data collection waves once every two years. TILDA is unique amongst longitudinal studies in the breadth of physical, mental health and cognitive measures collected. This data, together with the extensive social and economic data, makes TILDA one of the most comprehensive research studies of its kind both in Europe and internationally.

Last Update 21/09/2017

The original aim of the Metropolit cohort was to follow men from early school age to early mid-life, to explore intergenerational mobility and differential life-chances. In 2001 the cohort was revitalised in order to study the development of chronic diseases in a life course perspective.
The Metropolit cohort comprises all 11532 men born in 1953 in the Copenhagen Metropolitan area who were living in Denmark in 1968. These men have been followed repeatedly since their birth. In brief, we have data from birth certificates (1953) which include information on birth dimensions and father’s occupation. In 1965, 7,987 participated in a school-based survey and completed tests of cognition and enquiries regarding leisure-time activities and social aspirations. Data from draft board examinations at around age 19 have been collected for 11,108 of the men. These data include cognitive testing and health information. In 2004, 6,292 of the men responded to a mailed questionnaire with questions on health and lifestyle. In 2009-2010, 2486 of 7799 eligible cohort members participated in the Copenhagen Ageing Midlife Biobank (CAMB) study which comprised questionnaires, cognitive and physical testing as well as blood sampling. Further, around 300 men selected on their young adult and current cognitive performance have been through a neurophysiological examination including EEG, MRI, fMRI and sleep tests. The cohort has also been followed in nation-wide social and health registers for social life, medical and mental hospital diagnosis as well as cause of death from 1969 to 2016.

Last Update 21/09/2017

The aim of the Alfa Study is to focus on the processes taking place before the initiation of Alzheimer’s symptoms in order to design interventions to prevent or delay the onset of dementia. Inclusion criteria were being cognitively normal Spanish and/or Catalan-speaking persons aged between 45 and 74 years that agreed with the study procedures and tests: clinical interview and questionnaires associated to risk factors, cognitive tests, a blood sample extraction for DNA analysis, and MRI.

A subset (n=450) of the ALFA parent cohort participants are currently being recruited / undergoing a nested longitudinal long-term study, named the ALFA+ study, in which a more detailed phenotyping will be performed. On top of a similar characterization as in the ALFA parent cohort, it will entail the acquisition of both wet (CSF, blood, and urine sample collection) and imaging (magnetic resonance imaging [MRI] and PET) biomarkers. Furthermore, ALFA parent cohort participants may also be invited to participate in other BBRC studies such the ALFAlife primary intervention study (n=400) or the full genetic and neuroimaging characterisation study referred to as ALFAgenetics (n=2000).

Last Update 21/09/2017

The rpAD study is a longitudinal study, which recruits patients from the entire federal territory. In addition, patients from the Clinical Dementia Centre are recruited at the Neurological and Psychiatric Clinic of the University Medical Center of G’ttingen, with these usually classical clinical forms being internal controls. The aim of the study is to characterize the biological factors and parameters that define the disease progression in AD.

After the patient is informed and consent is given, the inclusion examination is carried out. It includes a detailed history and anamnesis as well as a physical examination, which includes an in-depth examination of the neurological status. A neuropsychological test for cognitive testing is performed using the CERAD-plus test battery. Furthermore, the GDS score is obtained, which allows an assessment of the severity of the cognitive deficits by means of a 7-stage classification. The ADL score is used to assess the activities of daily life (Lawton and Brody 1969).

Six months after the initial examination, a telephone follow-up is carried out. Further investigations are carried out on an annual basis and correspond to the initial examination.

Last Update 21/09/2017