EPND Cohort
Catalogue

Automated platform for the capture, storage and automated management of data collected during daily clinical activity.

Memory Outpatient Center of the MUMC for diagnosis of memory problems. Blood and/or cerebrospinal fluid are stored in a biobank. The biobank is a collection of stored body material, which is linked to relevant data, such as medical data, cognitive test performance or the brain scan. Patients participating in the BB-ACL study are called for repeated examination after diagnosis in order to map the course over time.

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.

Longitudinal cohort study (LCS) that screened more than 2,000 participants to collect a wide range of cognitive, clinical, neuroimaging and biomarker data to help further the understanding of the early stages of Alzheimer’s disease. From these 2,000 participants, EPAD followed up with 1,225 after one year, 421 after two years and 121 after three years before funding from the Innovative Medicine Initiative (IMI) ceased.

The cohort includes people with Parkinson’s disease, atypical parkinsonism, and healthy controls, who have their state of health regularly monitored by specialists over many years. The participants donate samples of body fluids such as blood or urine. They also take part in clinical examinations that analyse movement sequences and test their attention, memory, vision, speech, and sense of smell.

Prospective, longitudinal study that has recruited patients with early idiopathic Parkinson’s Disease, healthy controls and participants at risk of PD, and also participants with REM Sleep Behaviour Disorder.

Cohort on Degeneration Controls and Relatives: (1) Relatives of neurologically affected patients with e.g. AD, PD, FTD, PSP; (2) Interested persons without diagnosis of a neurodegenerative disease; (3) Persons undergoing medical treatment with other complaints in one of the clinics. Data collected yearly: medical history; neuropsychological assessment (memory, concentration and mood); neurological examination; blood sample. Optionally: further examinations of cognitive performance; motor skills; MRI; interview to a close person.

DELCODE included a total of 1,000 participants, examined yearly. The group includes persons with no complaints (healthy control subjects), patients with slight memory impairment or mild dementia and first-degree relatives of patients with diagnosed Alzheimer’s disease. minimum age at enrollment was 60. Data collected: comprehensive interview, detailed neuropsychological examination, blood test and a cranial MRI scan; optionally, a lumbar puncture.

The aim of the DESCRIBE study is to use the results obtained in the context of normal patient care, together with the results of studies on biomaterials (blood, nerve water, lacrimal fluid and urine) including genetic tests, for scientific purposes and thus to increase knowledge of neuro-degenerative diseases.

Longitudinal study where a total of 400 participants with and without Parkinson’s disease are being studied, with both groups of people with and without GBA mutation. The inclusion age is between 40 and 90 years.

COSCODE is an observational, longitudinal (4 years), prospective clinical cohort study involving 120 SCD, and 80 control study participants (40 individuals with no cognitive impairment, and 40 living with mild cognitive impairment - MCI, or dementia due to AD), all of which will undergo diffusion magnetic resonance imaging (MRI) and functional magnetic resonance imaging (fMRI) as well as behavioral and biomarker assessments at baseline and after 1 and 2 years.

Observational, longitudinal, population-based cohort aimed at assessing (i) diagnostic markers and risk factors for amyloid pathology in both congitively normal subjects and in normal subjects with amyloid pathology; (ii) the concordance of amyloid and other AD markers in monozygotic twins, (iii) the overlap between amyloid pathology in CSF and on PET scan. Collection of normative data for cognitive markers and biomakers for use in clinical practice.

The EMIF-AD 90+ study aimed to identify factors associated with resilience to cognitive impairment in the oldest-old. The study was conducted at the Amsterdam University Medical Center (Netherlands) and at the University of Manchester (UK). At baseline, neuropsychological and clinical data (vascular comorbidities, mood, sleep, physical performance, genetic factors) were collected from 129 participants (n=84 with normal cognition and n=38 with cognitive deficits). Regarding imaging measures: baseline MRI, Amyloid-PET and MEG have been collected. The study was part of the Innovative Medicine Initiative (IMI) European Medical Information Framework for AD (EMIF-AD) project.

The ENLIST-UK study is a 3-year longitudinal observational study aiming to recruit people with a diagnosis of dementia with Lewy bodies, Parkinson’s disease dementia or Alzheimer’s disease (for comparison purposes). Over the duration of the study, participants are invited to complete 5 visits (Screening, Baseline, Year 1, Year 2, Year 3). They are asked to complete neuropsychiatric questionnaires, undergo a blood test for biomarkers, and are also offered the option of a lumbar puncture to collect cerebrospinal fluid. The main objective is to examine if the presence of clinical core features, pro inflammatory cytokines or CSF AD markers are associated with increased rate of cognitive decline. A secondary objective is to build up a large cohort of people with dementia with Lewy bodies in the UK, collecting biological samples and longitudinal clinical and cognitive data. 17-B: Norwegian part of the prospective European DLB consortium study (E-DLB). Includes longitudinal and clinical and biomarker data, such as imaging (MRI, FDG PET and DAT SPECT), EEG, blood and CSF data.

Norwegian part of the prospective European DLB consortium study (E-DLB). Includes longitudinal and clinical and biomarker data, such as imaging (MRI, FDG PET and DAT SPECT), EEG, blood and CSF data. Not all included participants have consented to collect CSF.

The Maastricht Study, an observational prospective population-based cohort study that is characterised by a deep phenotyping approach. It studies common non-communicable diseases like type 2 diabetes, cardiovascular disease, cognitive decline, depression, and gastrointestinal, respiratory and musculoskeletal diseases.

Prospective cohort study of older adults in the Netherlands (55–84 years). The focus is on the determinants, trajectories and consequences of physical, cognitive, emotional and social functioning.

Since 2005 PD patients have been recruited from the outpatient clinic and/or ward for Parkinson’s disease at the University Hospital of Tuebingen. Clinical assessments are performed and biomaterial is collected, for a subset of patients longitudinally.

The occurrence of specific symptoms that allow the clinical diagnosis of Parkinson’s and Alzheimer’s disease is preceded by a long prodromal phase in which the neurodegenerative process leads to substantial neuronal loss. To enable earlier intervention or even neuroprotective therapy it is essential to identify, characterize and validate risk and prodromal markers for Parkinson’s and Alzheimer’s disease.

Parkinson patients and age-matched controls were followed for eight years for identification of biofluid markers for disease progression in PD.

The PROPARK cohort study includes over 1250 PD patients who have been examined annually and followed for 3 years (i.e., six assessments) on a broad range of motor and non-motor features.

Population-representative cohort of patients with incident Parkinson’s disease, recruited in Cambridgeshire, UK, over a 2 year period (2000-2002), and followed longitudinally for up to 20 years.

Observational study based in the UK collecting clinical data and biosamples from over 2,500 participants since 2012.

Aims to accurately characterise two independent cohorts of incident parkinsonism in Newcastle-Gateshead and Cambridgeshire. A key objective is to identify patients who develop Parkinson’s with dementia and the factors that predict its evolution.

Community-based cohort of incident Parkinson’s disease patients, recruited in Cambridgeshire, UK, over a 5 year period (2008-2013), and followed longitudinally with repeat assessments every 18 months.

Cross-sectional collection of serum, plasma, DNA in a memory-recruited cohort of patients with a diagnosis of AD, DLBD, CAA, PCA or FTLD.

A longitudinal observational memory recruited cohort study.

Community-recruited cognitively intact older adults belonging to the Flemish Prevent Alzheimer’s Disease Cohort KU Leuven (F-PACK) longitudinal observational cohort underwent a baseline evaluation consisting of detailed cognitive assessment, structural MRI and 18F-flutemetamol PET. At inclusion, subjects were stratified based on Apolipoprotein E (APOE)4 and Brain-Derived Neurotrophic Factor (BDNF) val66met polymorphism.

Clinically impaired and clinically unimpaired (CU) participants recruited at the Memory Clinic and undergoing: - MK6240 tau PET imaging - either CSF (MCI/AD) or amyloid PET imaging (CU) - MRI, neuropsychological examination - APOE genotyping - plasma sampling

Prospective multicentre cohort study on risk and protective factors for dementia in the Czech Republic.

The Charite memory cohort comprises patients from two interdependent local memory clinics in Berlin. Patients were recruited in special memory consultation hours using modern diagnostic methods to determine whether symptoms result from a brain disease or other medical or environmental causes. Our diagnostic procedures entail cognitive, neuropsychological and physical tests in conjunction with CSF biomarkers and structural MRI data.

A cohort from German academic memory clinics. The analysis of this cohort has three major aims: (1) To facilitate the development of diagnostic tools including neuropsychology, biomarkers, imaging and genetics. (2) To implement clinical trials in mild cognitive impairment and dementia and (3) to improve standard care for dementia in Germany.

Biofluid samples from patients who have undergone diagnostic assesment at the Memory Clinic, Rigshospitalet.

Ace Alzheimer Center Barcelona (Fundació ACE) is a center with extensive experience in the early detection of Alzheimer’s disease. Moreover, it is a reference center of clinical trials and has its own genetics laboratory and neuroimaging analysis and processing. Its cohort possess clinical data of SCD, MCI and AD dementia patients, among other dementias, since 1996. Moreover, a DNA bank for genetic studies, with more than 18,000 cryopreserved samples, and more than 1,500 CSF/plasma paired samples, stored at -80°C and -20°C, respectively. In addition, Proteomics data from 1300 CSF/plasma paired samples (7,000 proteins: Somalogic’s SomaScan® technology / 3,000 proteins: Olink® proteomics’ Explore panel), Proteomic data in plasma exosomes of an early onset MCI cohort, clinical data, GWAS, exome, epigenomic, MRI, APOE genotyping, and metabolomic data are available.

Study aimed at widening our knowledge of neurodegenerative diseases such as Alzheimer’s disease, Lewy body dementia and frontotemporal lobe degeneration, through the study of biochemical and neuroimaging markers.

A longitudinal study on pre-clinical Alzheimer’s disease.

Study aimed at verifying the clinical utility of multiplex mass spectrometry assay using CSF from highly phenotyped individuals with AD and related disorders (Socrates).

Cohort of patients suffering from cognitive decline. The cohort is based to daily clinical practice. Our aim is to discover and validate biomarker (clinical, biological, EEG and TEP and Brain MRI biomarkers). We are now working on the real world evidence of the utility of new biomarkers.

Prospective cohort of healthy aged cognitively unimpaired individuals with memory complaints.

The objective of the study is to address research questions concerning the preclinical and prodromal stage of Alzheimer’s disease, more specifically to address pathways of disease development, providing evidence to the biological mechanisms that may explain observed relationships.

ARWIBO is a cross-sectional dataset including data from more than 2,600 patients enrolled in Brescia and nearby areas. The database contains data of healthy elderly Controls (CTR), individuals with Mild Cognitive Impairment (MCI), and patients with Alzheimer’s disease (AD). Images are both structural images weighted in T1 and T2 (at 1.0T or 1.5T) as well as a few PET scans.

PET studies as part of the European Alzheimer Disease Consortium

A multicenter prospective longitudinal cohort study on cerebral amyloid angiopathy (CAA) and spontaneous amyloid-related imaging abnormalities (sARIA) of patients with CAA-related inflammation.

GERICO 3.0 includes clinical data from Center for Cognitive Disorders and Dementia (CDCD) by the Geriatrics and Gerontology section of the University of Perugia (Italy): • Demographic • Physiological history • Patient’s medical history based on ICD-10 diagnostic criteria • Pharmacological history according to ATC codes • Both routine and more specialized laboratory tests • neuroimaging • Neuropsychological tests • Physical performance test and anthropometric data • Caregiver details; • Diagnosis

Neurodegenerative dementia.

Participants were recruited at the Lisbon memory clinic.

Longitudinal, in-depth phenotyping of patients with different forms and degrees of cognitive impairment using neuropsychological, neuroimaging, and neurochemical tools. More specifically we investigate similairities and differences between subcortical small vessel disease, Alzheimer’s disease (AD) and mixed AD/SSSV using cognitive measures, biochemical markers and magetic resonance manifestations.

Observational memory clinic cohort including data and biosamples from patients remitted to the two Memory Clinics in Karolinska University Hospital in Stockholm. The cohort is suitable for biomarker research and clinical research about dementia. CSF, serum, plasma and for a subset also whole blood are banked. Database includes eg clinical measures, memory tests, ApoE, MRI.

Population-based, multidisciplinary, collaborative study designed to estimate the prevalence and incidence of AD, other dementias, mild cognitive impairment, and other neuropsychiatric conditions of aging in the Greek population and to investigate associations between nutrition and cognitive dysfunction/age-related neuropsychiatric diseases in this Mediterranean population.

Prospective population-based cohort study on risk factors and determinants of chronic diseases in middle-aged and elderly persons, that started in 1990.

Prospective, population based, longitudinal study on lifestyle and other determinants of health and disease as they develop over the life course. Started in 1987-1991, participants are examined every five years. 8th round of examination will start 2023.

Cross-sectional population-based survey of patients attending primary care health centers in the Aveiro region.

CHARIOT is a community-based register of individuals, over age 50 and without dementia, recruited from surgeries of General Practitioners in the London area. Participants undergo a series of neuropsychological evaluations to characterize the patterns of cognitive change and their inter-relationship in the earliest stages of cognitive impairment. In addition, how changes relate to the clinical presentation of cognitive impairment of the Alzheimer’s type may be evaluated over time. The study is a prospective single centre cohort study of approximately 700 participants self-referred or recruited from the CHARIOT register who were followed up for approximately 3 years (PMID: 31686098). The goals of the investigation are to better understand the natural history of cognitive and functional changes in participants at risk for MCI-AD, as well as develop a well-characterized, longitudinally followed prospective readiness cohort for future early AD clinical trials.

Non-profit organization that collects human brain tissue of donors with a variety of neurological and psychiatric disorders, but also of non-diseased donors.

The SMART-MR (Second MAnifestation of ARTerial disease-Magnetic Resonance) study is a single-center prospective cohort study among individuals with vascular disease referred to the University Medical Center (UMC) Utrecht, the Netherlands. The SMART-MR cohort forms a unique population of independently living individuals with symptomatic atherosclerotic disease and aims at investigating risk factors and consequences of brain changes on MRI and changes in cognition.

Dementia and Movement Disorders Clinic patients in Medical School Hospitals of Izmir University of Economics, Dokuz Eylül University, and Istanbul University.

A cohort of patients with neurodegenerative diseases.

Parkinson and other movements disorders.

French network of PD centers with collection of clinical, biological and imaging data.

Cohort whose numbers are expected to rise significantly over the next year (more than 1000 participants are expected). Serum, plasma and CSF are banked, usually in relation to specific projects.

The brain banks store post-mortem brain and central nervous system (CNS) tissue donated by the public for diagnosis and research into disorders.

Longitudinal, multicenter cohort recruited by the multisite French National Reference Center for Early-Onset Dementia in the cities of Lille, Rouen, and Paris. The main objective of the CoMAJ study is to better understand the course of AD in young patients by providing multimodal data (i.e., clinical, biological, social, genetic, imaging, and neuropathological data). Inclusion criteria are onset before the age of 60 (although age at inclusion could be over 60), and a diagnosis of AD based on the International Working Group criteria (with abnormalities of CSF biomarkers) and compatible with those of the NIA/AA.

Biological collection for young onset dementia and late onset dementia.

Identification of a clinical-genetic score to predict cognitive impairment in Parkinson’s disease sufferers.

Identification of clinical, imaging and biologic markers of PD onset and progression for use in clinical trials of disease-modifying therapies.

Brains for Dementia Research is an initiative funded jointly by Alzheimer’s Society and Alzheimer’s Research UK to support brain donation and provide much-needed brain tissue for researchers.

Appr. 50 controls and 50 patients with prodromal AD/AD dementia, who have undergone blood sampling, CSF sampling, tau-PET imaging, MRI and cognitive testing. Available samples: EDTA plasma, LiHeparin plasma, serum, CSF.

STEHC is a nested cohort study, approximating 300 elderly patients enrolled in southern Taiwan. The database contains the questionnaire (lifestyle, diet pattern) and bio-sample of healthy elderly control and patients with Alzheimer’s disease (AD). Available samples: plasma, serum, saliva, urine.

Pan European Population based Dataset of ALS

Alzheimer Hellas

Clininical cohort containing CSF, serum, DNA and RNA of patients with neurological complaints, sampled at time of first admission or consultation. Patients have been followed up clinically.

PPMI is a landmark study collaborating with partners around the world to create a robust open-access data set and biosample library to speed scientific breakthroughs and new treatments. In 2010, The Michael J. Fox Foundation and a core group of academic scientists and industry partners launched the Parkinson’s Progression Markers Initiative (PPMI) toward critically needed biological markers of Parkinson’s onset and progression. PPMI has since engaged thousands of partners — more sites; scientists and clinicians; industry experts; philanthropic partners; and, most importantly, study volunteers — to build a cornerstone of Parkinson’s research. Analysis from its open-access data set and available biosample library has deepened understanding of disease and informed design of dozens of therapeutic trials. Ten years after it began, PPMI announced a seismic expansion to nearly triple enrollment in the clinic and to add online data capture for tens of thousands. PPMI is continuing its mission to profile biological and clinical changes across the spectrum of disease with an emphasis on signals in at-risk individuals to identify the disease and intervention points as early as possible.

Fox Insight is a dynamic online longitudinal clinical study of people both with and without Parkinson's disease. The study seeks to enroll tens of thousands of diverse participants, making Fox Insight the largest and most representative Parkinson's research study to date. The Fox Insight platform deploys a variety of health, lifestyle, and Parkinson's routine assessments. Fox Insight is sponsored by The Michael J. Fox Foundation for Parkinson's Research.