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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 Samples: Stabilised samples (frozen or fixed)|Secondary samples: plasma|Secondary samples: DNA
Yes
No policy exists
Apply to PI or co-ordinator at resource|Access through collaboration with PI only|Access Committee mechanism|Local/ regional access|National access|International access|Access to industry|Access for pilot studies permitted|Resource has own ethics approval so usually no need for separate external ethics approval
Yes
Data held on computer based records
No
Data is held as individual records
No
Yes
No
Database on paper
No
No
Data summarised in database
No
Data collection ongoing
01/06/2009
No
No
0-500 clinical cases
27
Focus on early onset, inclusion of genetics, medical and social features and pathways (of patients and carers)
To determine the diagnostic and medical and social pathways followed by young patients suffering from early onset dementia
Young Onset Dementia
Disease Registers
France
Alzheimer’s disease & other dementias
2016