RHE31 - Haute Garonne register of childhood disabilities (qualified register)
Head :
Arnaud Catherine, UMR 1027 Inserm - Université Toulouse III
Last update : 06/12/2013 | Version : 3 | ID : 173
| General | |
| Identification | |
| Detailed name | Haute Garonne register of childhood disabilities (qualified register) |
| Sign or acronym | RHE31 |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL n°900263 |
| General Aspects | |
| Health determinants |
Social and psychosocial factors |
| Others (details) | cerebral palsy, pervasive developmental disorders |
| Keywords | sensory disabilities, mobility, pervasive developmental disorder, development |
| Scientific investigator(s) (Contact) | |
| Name of the director | Arnaud |
| Surname | Catherine |
| Address | Hôpital Paule de Viguier, 330 avenue de Grande Bretagne, TSA 70034, 31059 Toulouse Cedex 9 |
| Phone | + 33 (0)5 67 77 12 84 |
| catherine.arnaud@univ-tlse3.fr | |
| Unit | UMR 1027 Inserm - Université Toulouse III |
| Organization | Université Paul Sabatier |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | Institut national de la santé et de la recherche médical - Inserm Institut de veille sanitaire - InVS Projets de recherche |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | INSERM |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| 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. | Selection of subjects having the required inclusion criteria |
| Database objective | |
| Main objective |
Objectives in terms of public health: 1) Monitor prevalence rates of severe childhood disabilities over time in a defined geographical area (population-based register) 2) Describe characteristics of these disabilities, medical conditions associated with the main impairment 3) Describe care, assistance and schooling of these children 3) Assist in the planning of medical and social offering suitable for such children (availability of specialized care facilities, home care and outpatient care) Research objectives : 1) Progress in the etiological knowledge and study risk factors especially perinatal risk factors 2) Assess the consequences of preventive or screening measures implemented during pregnancy 3) Describe and understand factors associated with better participation and quality of life of disabled children |
| Inclusion criteria |
All children having one of the following impairment at 5 years and/or 8 years and for whom the parents (or legal representatives) reside in Haute-Garonne county at the time of regsitration : Motor impairments (including cerebral paly) Severe sensory impairments Severe intellectual disabilities Down syndroms Pervasive developmental disorders |
| Population type | |
| Age |
Childhood (6 to 13 years) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
Departmental |
| French regions covered by the database |
Languedoc-Roussillon Midi-Pyrénées |
| Detail of the geography area | Haute-Garonne |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 1986 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 2134 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Paraclinical data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Paraclinical data (detail) | Imagery (US, MRI, other examinations: CAT, EEG, etc.) |
| Administrative data (detail) | Identification data Care Schooling |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity |
| Procedures | |
| Data collection method | Identification of cases via administrative sources (departmental home for the disabled) and medical sources (neonatal database, neurologic and psychiatric out patient clinics, hospital records) active registration |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Vital status Some children are included at 2 ages. A longitudinal analysis is then possible for this subset only. |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://research.ncl.ac.uk/sparcle/ |
| Link to the document | |
| Description | |
| Link to the document | http://www.scpenetwork.eu/ |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) |
Scientific publications Access to data is possible upon a writing request submitted to the director, indicating the research objectives |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
