EpiTED - Developmental trajectory study from childhood to adulthood in a cohort of EpiTED patients: Research prognostic, clinical and biological factors

Head :
Baghdadli Amaria, Laboratoire Epsylon EA 4556

Last update : 07/28/2015 | Version : 3 | ID : 5642

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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 Developmental trajectory study from childhood to adulthood in a cohort of EpiTED patients: Research prognostic, clinical and biological factors
Sign or acronym EpiTED
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL : 1585321 v 0; CPP : n°12 04 02 autorisé le 5/06/2012; ANSM : ref B120572-70 autorisé le 11/05/2012
General Aspects
Medical area Psychology and psychiatry
Health determinants Genetic
Social and psychosocial factors
Keywords developmental trajectories, autism, Cohort, quality of life
Scientific investigator(s) (Contact)
Name of the director Baghdadli
Surname Amaria
Address 291 avenue du Doyen Gaston Giraud
Phone + 33 (0)4 67 33 99 68
Email a-baghdadli@chu-montpellier.fr
Unit Laboratoire Epsylon EA 4556
Organization Centre de Ressources Autisme
Collaborations
Funding
Funding status Mixed
Details PHRC National 1996; PHRC National 2006; Fondation Orange; ANR blanc 2011
Governance of the database
Sponsor(s) or organisation(s) responsible CHRU Montpellier
Organisation status Public
Additional contact
Main features
Type of database
Type of database Study databases
Study databases (details) Longitudinal study (except cohorts)
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
Database objective
Main objective Main objective: Study on the developmental trajectories in a cohort of young adults with autism prospectively monitored since childhood (followed over a total period of 10 years) and to research clinical and biological developmental risk factors. Secondary objective: To describe the characteristics of this young adult population with autism from a clinical, medical, developmental, social and family environment perspective as well as study the relationship between genetic score (developed by IntegraGen) and developmental trajectories highlighted during the 10 year follow-up, as identified among SNPs (panel developed by Intragen) that accurately predict the given trajectory
Inclusion criteria Inclusion criteria - Patients previously included in the cohort formed in 1997/1999 within the PHRC 96/97 network and having been followed for 10 years. - Adult patients (aged 18 years old and over)
Population type
Age Early childhood (2 to 5 years)
Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Adulthood (19 to 24 years)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Patients are enrolled from 46 centres located throughout the national territory.
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 10/1997
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 152
Data
Database activity Current data collection
Type of data collected Clinical data
Declarative data
Biological data
Clinical data (detail) Direct physical measures
Medical registration
Declarative data (detail) Paper self-questionnaire
Face to face interview
Biological data (detail) Saliva samples taken at third time of collection in order to identify genetic markers.
Presence of a biobank No
Health parameters studied Health event/morbidity
Quality of life/health perception
Procedures
Data collection method Self-administered questionnaire: manual input from a paper questionnaire. Interviews: manual input from a paper questionnaire. Clinical Examinations: handwritten
Participant monitoring Yes
Details on monitoring of participants Time 1: 280 children aged 4.9 years enrolled between 1997 and 1999, Time 2: 219 children aged 8.1 years enrolled between 2001 and 2002, Time 3: 152 adolescents aged 15 years enrolled between 2007 and 2009, Time 4: start of 10/2012 enrolment
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://www.autisme-ressources-lr.fr/epited
Link to the document http://tinyurl.com/Pubmed-EPITED
Description List of publications in Pubmed
Access
Terms of data access (charter for data provision, format of data, availability delay) Access to data base is subject to approval of scientist in charge and sponsor of the study
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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