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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…

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…

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…

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|…

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…

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…

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…

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…

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;…

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,…