ITMO public health
Last update : 08/17/2016 | Version : 2 | ID : 73221
| General | |
| Identification | |
| Detailed name | Cohort of Children with Multiple Disabilities: Long-Term Prospective Outcomes |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL |
| General Aspects | |
| Medical area |
Disability/handicap Pediatrics |
| Pathology (details) | Multiple disabilities |
| Health determinants |
Healthcare system and access to health care services Lifestyle and behavior Medicine Social and psychosocial factors |
| Keywords | multiple disabilities, care, children, quality of life |
| Scientific investigator(s) (Contact) | |
| Name of the director | Billette de Villemeur |
| Surname | Thierry |
| Phone | +33 (0)1 44 73 65 75 |
| thierry.billette@trs.aphp.fr | |
| Organization | AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP) |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | AP-HP Federation for Multiple Disabilities |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | AP-HP Federation for Multiple Disabilities, Trousseau Hospital, Paris Public Hospitals (AP-HP) |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Study databases |
| Study databases (details) |
Cohort 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. | Neuropaediatrics (100 children), specialised SSR (Soins de suite et de réadaptation [Follow-up care and rehabilitation]) (200 children), medical and social care (900 children) |
| Database objective | |
| Main objective | The aim of this cohort is to characterise multiple disabilities (groups according to multiple disability severity, burden of care and quality of life) and to describe the natural history of multiple disabilities. |
| Inclusion criteria | Children with multiple disabilities. |
| Population type | |
| Age |
Childhood (6 to 13 years) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | France |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2006 |
| Date of last collection (YYYY or MM/YYYY) | 2016 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1,200 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data |
| Clinical data (detail) |
Direct physical measures |
| Details of collected clinical data | severity; complexity of interrelated disabilities; instability; scalability; prognosis |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health care consumption and services Quality of life/health perception |
| Care consumption (detail) |
Medical/paramedical consultation |
| Procedures | |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Data gathered annually and analysed at 3, 5 and 10 years. |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | présentation de Thierry BILLETTE DE VILLEMEUR- Cohorte polyhandicap.pdf |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Contact the scientist in charge. |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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