EMPATHIE - Enfants - Parents - Trouble déficit de l’attention avec Hyperactivité : Impact et Evaluation 
Head :
Ponthieux Anne
Last update : 12/01/2018 | Version : 1 | ID : 174
| General | |
| Identification | |
| Detailed name | Enfants - Parents - Trouble déficit de l’attention avec Hyperactivité : Impact et Evaluation |
| Sign or acronym | EMPATHIE |
| General Aspects | |
| Medical area |
Neurology Psychology and psychiatry |
| Health determinants |
Social and psychosocial factors |
| Others (details) | Attention-deficit hyperactivity disorder (ADHD) |
| Keywords | Proximology siblings Parents |
| Scientific investigator(s) (Contact) | |
| Name of the director | Ponthieux |
| Surname | Anne |
| Phone | +33 (0)1 55 47 64 14 |
| anne.ponthieux@novartis.com | |
| Organization | Novartis Pharma |
| Collaborations | |
| Funding | |
| Funding status |
Private |
| Details | Novartis Pharma S.A.S. |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Novartis Pharma S.A.S. |
| Organisation status |
Private |
| 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 |
A selection of health institutions and services |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. |
Each investigator proposed the study and collected informed consent to all eligilble parents and siblings viewed in consecutive routine consultation for the ADHD. A short questionnaire was completed by the investigator at inclusion. The patient and his/her familly wre blind of investigator assessment. Parents/tutors and sibling filled in each a self-questionnaires, send back by mail (pre-paid envelope). |
| Database objective | |
| Main objective |
Study of the impact of the Attention-Deficit Hyperactivity Disorder (ADHD) on the parents/tutors of afflicted school children. The study also strives to evaluate the impact of the ADHD on the siblings of the children afflicted and likewise of the impact of the disease on the school environment, thanks to the evidence provided by parents/tutors. |
| Inclusion criteria |
Inclusion criteria for parents/tutors: - Parents (father, mother or tutors) of a child aged 6 to 18 years suffering from ADHD - Parents (father, mother, or tutors) accompanying their ADHD children for a routine consultation during the observation period, - Parent (father, mother or tutor) of an child whether or not treated for his/her ADHD. Inclusion criteria for siblings: - Brother or sister without ADHD of a child corresponding to the aforementioned criteria, - Brother or sister at least 9 years old and living with the ADHD child. Non-inclusion criteria : - ADHD child with important co-morbidity that could influence assessment of ADHD impact on psycho-socio-economic value, - Patients sibling / parents with important co-morbidity that could influence the evaluation of their experience (i.e. at the level of the socio-psycho-economic impact), - Parents unable to complete a self-questionnaire, - Parents who participated to the feasability study (interviews) |
| Population type | |
| Age |
Childhood (6 to 13 years) Adolescence (13 to 18 years) |
| Population covered |
General population |
| Gender |
Male Woman |
| Geography area |
Local |
| French regions covered by the database |
Nord - Pas-de-Calais Picardie |
| Detail of the geography area | peadiatric psychopathology department, Robert Debré Hospital (Paris) and pediatric neurology department, University Hospital of Amiens |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 09/2007 |
| Date of last collection (YYYY or MM/YYYY) | 12/2008 |
| Size of the database | |
| Size of the database (number of individuals) |
[500-1000[ individuals |
| Details of the number of individuals | 129 |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Declarative data |
| Clinical data (detail) |
Direct physical measures |
| Declarative data (detail) |
Paper self-questionnaire |
| Presence of a biobank |
No |
| Health parameters studied |
Quality of life/health perception |
| Procedures | |
| Data collection method | self-questionnaires filled in bye parents and siblings at home and returned by mail |
| Participant monitoring |
No |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | methods for accessing the database are currently being defined |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
