DMLA 2007 - Hereditary Retinal Dystrophy 2007

Head :
Sahel José-Alain, UMR592 UPMC/CHNO DES XV-XX/INSERM
BENCHABOUNE , INSERM CIC 503 CHNO DES XV

Last update : 07/02/2014 | Version : 1 | ID : 60093

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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 Hereditary Retinal Dystrophy 2007
Sign or acronym DMLA 2007
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CPP 11 décembre 2006, n° IDRCD 2006 -a00347-44
General Aspects
Medical area Ophthalmology
Radiology and medical imaging
Health determinants Genetic
Others (details) Hereditary retinal dystrophy
Keywords Visual function, morphometric data, retina, impact, quality of life, assessment, disability
Scientific investigator(s) (Contact)
Name of the director Sahel
Surname José-Alain
Address 75012 PARIS
Phone + 33 (0)1 40 02 14 04
Email j-sahel@quinze-vingts.fr
Unit UMR592 UPMC/CHNO DES XV-XX/INSERM
Organization CHNO DES
Name of the director BENCHABOUNE
Address 75012 PARIS
Phone + 33 (01) 40 02 14 39
Email mb@cicoph.org
Unit INSERM CIC 503 CHNO DES XV
Organization INSERM
Collaborations
Participation in projects, networks and consortia Yes
Funding
Funding status Mixed
Details ANR, FRM
Governance of the database
Sponsor(s) or organisation(s) responsible CHNO DES QUINZE-VINGTS
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Case control study
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. Prospective Other bodies active in creating this cohort: CHU, CHG
Database objective
Main objective General objective: to identify genetic predisposition factors Secondary objectives: - to study morphofunctional correlations - to research predictive signs of progression.
Inclusion criteria Individuals with hereditary retinal dystrophy Related individuals
Population type
Age Adulthood (19 to 24 years)
Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Elderly (65 to 79 years)
Great age (80 years and more)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Multicentric cohort throughout France
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 11/2007
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 1500
Data
Database activity Data collection completed
Type of data collected Declarative data
Paraclinical data
Biological data
Declarative data (detail) Paper self-questionnaire
Face to face interview
Paraclinical data (detail) Imaging, visual acuity, visual field assessment, colour vision examination, electroretinography
Biological data (detail) Type of samples taken: Blood
Presence of a biobank Yes
Contents of biobank DNA
Details of biobank content DNA bank
Health parameters studied Health event/morbidity
Health event/mortality
Quality of life/health perception
Procedures
Data collection method Self-administered questionnaire: manual input Interview: manual input Biological analysis: manual input
Participant monitoring Yes
Details on monitoring of participants (Indefinite duration)
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://bjo.bmj.com/content/82/9/996.long
Access
Terms of data access (charter for data provision, format of data, availability delay) Data may be used by academic teams.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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