This website is now the new JPND's archival platform. This website hosts all of JPND's archived content and resources.
Please continue to visit this site to access publications, videos and reports from JPND's activities.
16749-2
Dev
Lifestyle changes prevent cognitive decline
Enhanced lifestyle counselling prevents cognitive decline even in people who are carriers of the APOE4 gene, a common risk factor of Alzheimer’s disease, according to a new study published in JAMA Neurology. The two-year FINGER trial involved 60–77 year-old people…
Irish ALS Register
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…
Australian National Creutzfeldt-Jakob Disease Registry
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…
Young Onset Dementia
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…
FRAlim : Registry on Amyotrophic Lateral Sclerosis (ALS) in Limousin
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…
National Data Bank for Alzheimer’s Disease
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…
ALS quality register
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…
Amyotrophic Lateral Sclerosis Online Genetics Database (ALSOD )
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 register swabia
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…