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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.

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

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

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

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 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

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

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

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

The PROTECT Study will gather data and support innovative research to improve our understanding of the ageing brain and why people develop dementia.

We know that certain factors such as exercise, smoking and blood pressure affect our risk of dementia, and there is increasing evidence that our genes also play a role.

Participants in PROTECT will provide information about themselves and complete online assessments to measure their abilities such as memory and reasoning. By repeating these assessments each year we will monitor how they change over the study. Participants will also provide a sample of their DNA through a simple at-home kit. PROTECT participants will also have the opportunity to take part in innovative studies to answer crucial questions such as:

  • How do key measures, such as memory, language and reasoning change over time as we age
  • How do our lifestyle choices, including our exercise habits and diet affect our risk of dementia
  • What role do genetics play in the ageing brain? How do they affect how our brain functions and what is their influence on development of dementia?
  • What are the early signs of dementia and how can they be distinguished from normal ageing
  • What approaches can be delivered online to influence the ageing process and the development of dementia?

Last Update 21/09/2017