Category survey

SUVIMAX 2 Study of the relations between global food behaviors and/or specific nutritional factors and ageing on a large population of mature adults [email protected] NR, Inserm, MGEN, Mederic, IPSEN, Pierre Fabre NR, Inserm, MGEN, Mederic, IPSEN, Pierre Fabre Data analysis…

ADC Amsterdam Dementia Cohort www.alzheimercentrum.nl [email protected] ZonMW ZonMW Data collection ongoing| Data analysis ongoing Dutch and English Netherlands Yes, for all the cohort Clinical data, biomarker data, mri, eeg, meg ,neuropsychology Other health assessment Yes – intend to apply for…

CLEMENS [email protected] Many Switzerland Neurodegenerative disease in general Yes Apply to PI or co-ordinator at resource|Access through collaboration with PI only|Local/ regional access|National access|International access|Access to industry|Access for pilot studies permitted Yes Many Data held on computer based records…

Huntingtons disease [email protected] Czech language Czech Republic Jan Motlik, Czech Academy Science, Institute of Animal Physiology and Genetics-PIGMOD Center, , Transgenic minipig for Huntington’s disease (TgHD)-funded by CHDI, Czech-Norwegian Research Programme 7F14308, National Programme of Sustainibility LO1609|Radoslav Matej, First…

BNMDR (Belgian Neuromuscular Disease Registry) www.bnmdr.be [email protected] English (French/Dutch) Belgium For most of diseases: Gender, date of birth, living place, diagnosis, functionnal status and reference center. Specifically for Duchenne muscular dystrophy and SMA, additional variables are collected for the TREAT-NMD…

Register Competence Network Parkinson’s Disease www.kompetenznetz-parkinson.de [email protected] Germany  demographics, diagnosis, symptomatic, medical, psychological and psychiatric examination, concomitant medication and diseases, medication, imaging, optional assessments: UPDRS, PDQ-39, MADRS, MMSE Parkinson’s disease Yes Data made publicly available after a specified time point…

Surveillance of human spongiform encephalopathies www.cjd-goettingen.de [email protected] Germany  Neuropsychological test, neurological exam, MRI, CSF, follow up tests Prion disease Yes Data to be made publicly available immediately Yes Yes, for all the cohort No No Data collection ongoing|Data analysis ongoing…

Rapid progressive Alzheimer’s disease (rpAD): clinical and molecular characterization of a distinct subtype of AD www.alzheimer.med.uni-goettingen.de [email protected] Germany Neuropsychological test, neurological exam, MRI, CSF, follow up tests Alzheimer’s disease and other dementias Data to be made publicly available immediately Yes…

KNDD-FTLDc www.neurozentrum-ulm.de [email protected] Germany  clinical, EMG, MRI, CSF, blood Alzheimer’s disease and other dementias|Motor neurone diseases|Neurodegenerative disease in general Yes Data made publicly available after a specified time point CONSTITUTION AND BY-LAWS OF THE FTLD NETWORK Yes Yes, for all…

ALS register swabia www.uniklinik-ulm.de [email protected] Germany  clinical, EMG, MRI, CSF, blood Motor neurone diseases Yes Data made publicly available after a specified time point CONSTITUTION AND BY-LAWS OF THE ALS NETWORK Yes Yes, for all the cohort Yes No Data…

Amyotrophic Lateral Sclerosis Online Genetics Database (ALSOD ) www.umu.se [email protected] Swedish and English Sweden standard clinical EFNS criteria plus genetic screening criteria Motor neurone diseases|Prion disease Secondary samples: plasma|Secondary samples: DNA|Secondary samples: protein extracts|Secondary samples: cell lines derived from primary…

ALS quality register [email protected] Swedish Sweden Questionnaire data, clinical findings, neurophysiological findings, imaging, laboratory tests, funtional scales Motor neurone diseases No requirement to make data publicly available Apply to PI or co-ordinator at resource|National access|Resource has own ethics approval…

National Data Bank for Alzheimer’s Disease [email protected] French France Diagnosis according to the clinician point of view (ICD10)  Neurodegenerative disease in general No No requirement to make data publicly available Apply to PI or co-ordinator at resource|Access Committee mechanism|Other…

FRAlim : Registry on Amyotrophic Lateral Sclerosis (ALS) in Limousin [email protected] France B Marin, UMR Inserm 1094, Population-based epidemiology of amyotrophic lateral sclerosis (ALS) in an ageing Europe–the French register of ALS in Limousin (FRALim register).|B Marin, UMR Inserm…

Young Onset Dementia www.centre-alzheimer-jeunes.fr [email protected] French France Standardized clinical assessment,neuropsychological tests, MRI, FDG-PET, CSF in most cases, plasma DNA, brain tissue when available Alzheimer’s disease and other dementias Primary Samples: Stabilised samples (frozen or fixed)|Secondary samples: plasma|Secondary samples: DNA Primary…

Australian National Creutzfeldt-Jakob Disease Registry [email protected] English Australia Collins S. Creutzfeldt-Jakob disease surveillance in Australia: update to December 2013. Commun Dis Intell Q Rep. 2014 Dec 31;38(4):E348-355.| Collins S. Enhanced geographically restricted surveillance simulates /Masters CL. Creutzfeldt-Jakob disease cluster…

Irish ALS Register [email protected] English Ireland Hardiman et al Family aggregation of neuropsychiatric disease in ALS Kindreds|Hardiman, McLAughlin, Bradley: Popuation genomics of ALS|Hardiman , Pender: Cognitive subphenotypes in ALS Clinical Characterization, EMG, Motor neurone diseases No No requirement to make…

CAVIA Cerebral amyloid angioathy: vascular imaging and fluid biomarkers of amyloid deposition www.caviaproject.nl [email protected] ZonMW ZonMW Through links to medical records Netherlands Yes Access through collaboration with PI only| Local/ regional access| National access| International access| Access to industry| Access…

AiBL The Australian Imaging, Biomarkers & Lifestyle Flagship Study of Ageing [email protected] Only through the study Australia Yes Apply to PI or co-ordinator at resource|Access Committee mechanism|Other access mechanism|International access|Access to industry|Access for pilot studies permitted|Applicant needs to provide…

IDEM Case-Control Study on Tracking Nursing Home Patients with Dementia [email protected] PHRC 2009 PHRC 2009 Only through the study|Through links to medical records France Yes Apply to PI or co-ordinator at resource No No To assess the prelevance of systematically…

PARTAGE Case-Control Study on Parkinson’s Disease Among Mutualité Sociale Agricole Affliates in Five Départements [email protected] ANR – ANSES – France Parkinson ANR – ANSES – France Parkinson Only through the study|Through links to other records or registers(drug claim databases) France…

Epidemiology and Genetics of Alzheimer’s Disease www.osu.cz [email protected] Ministry of Health Ministry of Health Only through the study|Through links to medical records Czech Republic No No policy exists Yes Living donors: DNA Primary Samples: Stabilised samples (frozen or fixed) No…

CIMA-Q The Consortium for the Early Identification of Alzheimer’s Disease [email protected] CQDM and Brain Canada (with financial support of Health Canada) CQDM and Brain Canada (with financial support of Health Canada) Only through the study Canada To advance knowledge about…

PACt-MD Prevention of Alzheimer’s Dementia in High Risk Populations: A Randomized Controlled Trial of a Combination of Cognitive Remediation and Brain Stimulation [email protected] Chagnon Family and Brain Canada (with financial support of Health Canada) Chagnon Family and Brain Canada…

ASPREE ASPirin in reducing Events in the Elderly: an RCT of low dose aspirin [email protected] NIH NIH Only through the study|Through links to medical records|Through links to other records or registers(Cancer and other registries) Australia No Data made publicly…

ONWEBDUALS ONWebDUALS: ONTology-based Web Database for Understanding Amyotrophic Lateral Sclerosis (Portugal) [email protected] FCT / Joint Programme – Neurodegenerative Disease Research (FPJ000876-JPND-PS/001/2013) FCT / Joint Programme – Neurodegenerative Disease Research (FPJ000876-JPND-PS/001/2013) Only through the study Portugal No No policy exists…

FRONTIER Clinical, imaging and biological investigations of frontotemporal dementia and related conditions www.ftdrg.org [email protected] NHMRC and ARC NHMRC and ARC Only through the study|Through links to medical records Australia Yes Apply to PI or co-ordinator at resource|Local/ regional access|National access|International…

DECI DZNE Cognitive Impairment Longitudinal Study www.dzne.de [email protected] Germany No No requirement to make data publicly available No No To build up a cohort of pre-MCI and MCI patient that allow to identify early markers of dementia 0 1-1,000 200-500…

DAFS DZNE Alzheimer Disease Family Study www.dzne.de [email protected] Germany No No requirement to make data publicly available No No To build up a cohort of healthy probands who are at increased risk to develop Alzheimer disease 0 1-1000 200-500 Neuropsychology,…

FTLD Cohort www.neurozentrum-ulm.de [email protected] Germany Yes Data made publicly available after a specified time point Yes Yes, for all the cohort To observe appearance and progression of FTLD 0 1-1,000 200-500 Behavioural assessment battery; FBI; NPI; AES-C; GDS-15; CRS; E60F;…

ONWEBDUALS ONTology-based Web Database for Understanding Amyotrophic Lateral Sclerosis (Sweden) www.umu.se [email protected] VR VR Only through the study Sweden No Not applicable No requirement to make data publicly available No Primary samples: Supplied fresh| Secondary samples: plasma| Secondary samples: DNA…

ALSrisc Biomarkers, environmental and lifestyle risk factors for amyotrophic lateral sclerosis [email protected] Swedish Research Council, Karolinska Institutet, Ulla-Carin Lindqvist Foundation Swedish Research Council, Karolinska Institutet, Ulla-Carin Lindqvist Foundation Only through the study| Through links to medical records| Through links…

TERRE Case-Control Study on Parkinson’s Disease Among Mutualité Sociale Agricole Affliates in Five Départements [email protected] ANR – ANSES – France Parkinson ANR – ANSES – France Parkinson Only through the study France Yes Access through collaboration with PI only No…

BioFINDER The Swedish BioFINDER study www.biofinder.se [email protected] ECR, SRC, Wallenberg etc ECR, SRC, Wallenberg etc Only through study 100% of baseline data, but longitudinal data is still colllected Sweden Yes Access through collaboration with PI only| Local/ regional access| National…

ICICLE-PD Incidence of Cognitive Impairments in Cohorts with Longitudinal Evaluation in Parkinson’s disease [email protected] Parkinson’s UK Parkinson’s UK Only through study| Through links to medical records United Kingdom Yes Apply to PI or co-ordinator at resource| Access independent of PI|…

FTD-RisC Early biomarker changes in frontotemporal dementia www.alzheimercentrumzwn.nl [email protected] Memorabel Memorabel Only through study Netherlands Yes Apply to PI or co-ordinator at resource| Access through collaboration with PI only| Local/ regional access| National access| International access| Access for pilot studies…

PRODIA [email protected] ZonMW ZonMW Through links to other records or registers(Amsterdam dementia cohort) Access Netherlands Yes Apply to PI or co-ordinator at resource No policy exists Yes Living donors: blood| Living donors: blood derivatives| Living donors: DNA| Living donors: cerebro-spinal…

ADNI and Alzheimer Dementia Cohort Brain connectivity: the missing link between amyloid and clinical symptoms www.alzheimercentrum.nl [email protected] ZonMW ZonMW As part of other studies (ADNI and Amsterdam Dementia Cohort) Netherlands Yes Apply to PI or co-ordinator at resource| Access through…

Dublin Brain Bank Biobanks Ireland Neurodegenerative disease in general 2016    

ALSOD Biobank at UmU Biobanks Sweden Alzheimer’s disease & other dementias|Motor neurone diseases|Prion disease 2016    

ISD Biobank Biobanks Germany Alzheimer’s disease & other dementias|Neurodegenerative disease in general 2016    

Liquor Bank Ulm (KNDD-FTLD, BMBF/DFG-ALS, EU-NeuroTAS, EU-Nadine, EU-cNeupro, LS-BW-PARK/BONDY) Biobanks Germany Neurodegenerative disease in general 2016    

Brain-Net Biobanks Germany Neurodegenerative disease in general 2016    

NEURO-MUC Biobanks Germany Alzheimer’s disease & other dementias|Neurodegenerative disease in general 2016    

VUmc DNA biobank Biobanks Netherlands Alzheimer’s disease & other dementias|Neurodegenerative disease in general 2016    

Antwerp Biobank Biobanks Netherlands Alzheimer’s disease & other dementias 2016    

Parkinson Lab, Dept Clinical Genetics Biobanks Netherlands Parkinson’s disease & PD-related disorders 2016    

Neurological Tissue Bank and Biological Samples Biobanks 2016    

Navarra Neurological Tissue Bank Biobanks 2016    

Neurological Tissue Bank (BTN) Biobanks 2016