Dev

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…

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…

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…

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…

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…

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…

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…

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…