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
| 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 |
| 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 |
