YOD - Youg Onset Dementia

Head :
Pasquier Florence, EA1046
Richard Florence, UMR INSERM 744

Last update : 01/09/2013 | Version : 1 | ID : 5391

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name Youg Onset Dementia
Sign or acronym YOD
General Aspects
Medical area Psychology and psychiatry
Health determinants Social and psychosocial factors
Keywords Dementia, Alzheimer's disease, Frontotemporal dementia, Vascular dementia, Dementia with Lewy bodies, Early Onset, Pronostic factors, Social impact, Medical pathway, genetics
Scientific investigator(s) (Contact)
Name of the director Pasquier
Surname Florence
Address CMRR, Neurologie, Hôpital Roger Salengro, CHRU de Lille, 59037 Lille Cedex
Phone + 33 (0)3 20 44 57 85
Email florence.pasquier@chru-lille.fr
Unit EA1046
Organization Université Lille Nord de France
Name of the director Richard
Surname Florence
Address Institut Pasteur de Lille, 1 rue Calmette, 59019 Lille Cedex
Phone + 33 (0)3 20 87 72 43
Email florence.richard@pasteur-lille.fr
Unit UMR INSERM 744
Organization Université Lille Nord de France, Lille2 et Institut National de Santé et Recherche
Collaborations
Funding
Funding status Public
Details Plan Alzheimer 2008-2012- Mesure 19 (CNR-MAJ: Centre national Alzheimer malades jeunes) Le programme hospitalier de recherche clinique PHRC G-MAJ 2009 et Exome 2010 (D. Hannequin Rouen)
Governance of the database
Sponsor(s) or organisation(s) responsible CHRU Lille
Organisation status Public
Sponsor(s) or organisation(s) responsible Université Lille Nord de France, Lille2
Organisation status Public
Additional contact
Main features
Type of database
Type of database Morbidity registers
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. all consecutive volunteer patients referred to CNR-MAJ (Lille, Rouen, Paris la Salpêtrière) for early onset dementia
Database objective
Main objective Collect of medical, medicosocial, economic, neuropsychological,biological and imaging information in young patients consulting at CNR-MAJ, with follow-up every 6 months until death. If specific consent has been granted, an autopsy for neuropathological confirmation of the diagnosis will be performed.
Primary objective
- To determine the diagnostic and medicosocial pathways followed by young patients suffering from
early onset dementia
Secondary objectives
- To evaluate factors associated with diagnostic delay
- To constitute clinical, imaging and biological resources for this dementia occuring in young subjects.
Inclusion criteria volunteer patients referred to the CNR-MAJ (Lille-Rouen-Paris Salpêtrière) for a dementia syndrome begining before age 60.
Population type
Age Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Elderly (65 to 79 years)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Lille, Rouen, Paris Salpêtrière
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2009
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 338 (dont/with 220 Alzheimer)
Data
Database activity Current data collection
Type of data collected Clinical data
Declarative data
Paraclinical data
Biological data
Administrative data
Clinical data (detail) Direct physical measures
Medical registration
Declarative data (detail) Paper self-questionnaire
Face to face interview
Paraclinical data (detail) MRI, FDG-PET (for Alzheimer's disease and frontotemparal dementia patients), neuropsychological and functional evaluations
Biological data (detail) Genetic data for Alzheimer's disease and fontotemporal dementia patients
Administrative data (detail) age, gender, educational level, medico social assistance
Presence of a biobank Yes
Contents of biobank Serum
Plasma
Fluids (saliva, urine, amniotic fluid, …)
DNA
Others
Details of biobank content CSF, Brain, serum, plasma, DNA
Health parameters studied Health event/morbidity
Health event/mortality
Others
Other (detail) neuropsychological evaluation, evaluation of social impact, imaging, biological and neuropathological collections
Procedures
Data collection method Standardized medical, social, neuropsychological data and family and personal history will be recorded at inclusion and at each follow-up. These data will be collected in a paper based questionnaire and be validated and informatised with a e-crf in each center by a clinical research assistant.
Participant monitoring Yes
Details on monitoring of participants Clinical and medicosocial follow-up every 6 months until death or withdraw . Alzheimer's disease patients will have another MRI and PET at 1 year interval
Links to administrative sources No
Promotion and access
Promotion
Access
Terms of data access (charter for data provision, format of data, availability delay) Not defined
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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