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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 permitted| Resource has own ethics approval so usually no need for separate external ethics approval
No policy exists
Yes
Living donors: blood| Living donors: blood derivatives| Living donors: DNA| Living donors: cerebro-spinal fluid| Living donors: other (Skin biopsy)
Primary Samples: Stabilised samples (frozen or fixed)| Secondary samples:(derivatives of primary samples)| Secondary samples: plasma| Secondary samples: DNA| Secondary samples: RNA
Yes
Yes, for all the cohort
Aim to find early disease-related differences and biomarkers in MRI, blood, cerebrospinal fluid and neuropsychological assessment in presymptomatic familial frontotemporal dementia
6
Dopper et al., 2014 Structural and functional brain connectivity in presymptomatic familial frontotemporal dementia – Neurology
Rohrer et al., 2015 Presymptomatic cognitive and neuroanatomical changes in genetic frontotemporal dementia in the Genetic Frontotemporal dementia Initiative (GENFI) study: a cross-sectional analysis Lancet Neurology
Dopper et al., 2016 Cerebral blood flow in presymptomatic MAPT and GRN mutation carriers: A longitudinal arterial spin labeling study NeuroImage Clinical
Jiskoot et al., 2016 Presymptomatic cognitive decline in familial frontotemporal dementia: A longitudinal study Neurology
Meeter et al., 2016 Neurofilament light chain: a biomarker for genetic frontotemporal dementia Annals of Clinical and Translational Neurology
Meeter et al., 2016 Progranulin levels in plasma and cerebrospinal fluid in granulin mutation carriers Dementia and Geriatric Cognitive disorders Extra
1-1,000
200-500
MRI, DNA, RNA, plasma, serum, CSF, NPA, skin biopsy
No
No
Prospective cohort
Age| Sex
Yes
Control participants are 50% at-risk subjects, without carrying the gene mutation
Data collection ongoing| Data analysis ongoing
Yes – intend to apply for funding
Data summarised in database
Database is web-based
Database on spreadsheet (e.g. excel)
Database on paper
No
Data is web-based
Early biomarker changes in frontotemporal dementia
Motor neurone diseases| Alzheimer’s disease and other dementias
Case Control Studies
Netherlands
Alzheimer’s disease & other dementias|Motor neurone diseases
2016
