YOD - Youg Onset Dementia
Head :
Pasquier Florence, EA1046
Richard Florence, UMR INSERM 744
Richard Florence, UMR INSERM 744
Last update : 01/09/2013 | Version : 1 | ID : 5391
| 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 |
| 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 |
| 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 |
