Last update : 07/08/2014 | Version : 1 | ID : 60011
| General | |
| Identification | |
| Detailed name | Familial Retinal Vein Occlusion |
| Sign or acronym | OVR |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | banque d'ADN de l'institut de la vision |
| General Aspects | |
| Medical area |
Cardiology Ophthalmology |
| Health determinants |
Genetic Occupation |
| Others (details) | Familial retinal vein occlusion |
| Keywords | urban population, Health episodes, rural population, hospitalisation, health system |
| Scientific investigator(s) (Contact) | |
| Name of the director | Paques |
| Surname | Michel |
| Address | 75012 PARIS |
| Phone | + 33 (0)1 40 02 14 54 |
| michel.paques@gmail.com | |
| Unit | CIC 503 INSERM |
| Organization | INSERM - Institut National de la Santé et de la Recherche |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | PHRC |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | INSERM - Institut National de la Santé et de la Recherche Médicale |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Study databases |
| Study databases (details) |
Not-repeated cross-sectional studies (except case control studies) |
| Database recruitment is carried out by an intermediary |
An administrative base or a register |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Retrospective Number of required subjects: [100-500] |
| Database objective | |
| Main objective | General objective: to phenotype forms of familial retinal vein occlusion Secondary objective: to collect DNA |
| Inclusion criteria | At least 3 cases of retinal vein occlusion (RVO) in the immediate family (two cases if one occurs before the age of 30). |
| Population type | |
| Age |
Great age (80 years and more) |
| Population covered |
General population |
| Gender |
Male Woman |
| Geography area |
Local |
| Detail of the geography area | Multicentric cohort throughout France (2 centres) |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 01/2000 |
| Size of the database | |
| Size of the database (number of individuals) |
< 500 individuals |
| Details of the number of individuals | 40 (03/05/2013) |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Declarative data Paraclinical data Biological data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Declarative data (detail) |
Face to face interview |
| Paraclinical data (detail) | Imaging |
| Biological data (detail) | Type of samples taken: DNA |
| Presence of a biobank |
Yes |
| Contents of biobank |
DNA |
| Details of biobank content | DNA bank |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Self-administered questionnaire: input from a paper questionnaire; Interviews: direct input; Clinical examinations: handwritten Biological analysis: handwritten |
| Participant monitoring |
No |
| Details on monitoring of participants | (Indefinite duration) |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/17173011 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/20703046 |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/19701812 |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | To be decided if data may be used by academic teams To be decided if data may be used by industrial teams |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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