ITMO public health
Last update : 07/02/2014 | Version : 1 | ID : 5222
| General | |
| Identification | |
| Detailed name | Auvergne-Loire observatory on chronic inflammatory diseases of the musculoskeletal system occurring in childhood - Arthrites Juvéniles Idiopathiques cohort (long-term follow-up of children with juvenile idiopathic arthritis) |
| Sign or acronym | APICALE-AJI |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL en cours |
| General Aspects | |
| Medical area |
Rheumatology |
| Health determinants |
Climate |
| Others (details) | Juvenile Idiopathic Arthritis |
| Keywords | Very long-term progression of children with Juvenile Idiopathic Arthritis (AJI), transition period, joint disease, repercussions |
| Scientific investigator(s) (Contact) | |
| Name of the director | Merlin |
| Surname | Etienne |
| Address | Service de pédiatrie CHU Estaing 1 place Lucie Aubrac 63003 Clermont-Ferrand |
| Phone | + 33 (0)4 73 75 00 15 |
| e_merlin@chu-clermontferrand.fr | |
| Unit | Inserm CIC 501 |
| Organization | CHU Clermont-Ferrand / INSERM - Institut National de Santé et Recherche |
| Name of the director | Chausset |
| Surname | Aurélie |
| Address | 1 place Lucie et Raymond Aubrac 63003 CLERMONT-FERRAND Cedex 1 |
| Phone | + 33 (0)4 73 75 51 77 |
| achausset@chu-clermontferrand.fr | |
| Unit | Centre de Recherche Clinique chez l’Enfant - Inserm CIC 1405 CRCTCP, CHU ESTAING |
| Organization | CHU Clermont-Ferrand / INSERM - Institut National de Santé et Recherche |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | Le programme hospitalier de recherche clinique local 2009 |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | CHU Clermont-Ferrand |
| Organisation status |
Public |
| Sponsor(s) or organisation(s) responsible | INSERM |
| 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 |
| Database objective | |
| Main objective | The primary objective of this project is to describe the very long-term progression of Juvenile Idiopathic Arthritis (AJI) in children, from onset of the disease until adulthood that extends past the transition period. The follow-up will particular focus on joint disease activity as well as very long-term repercussions.- The secondary objectives will be to provide data relating to treatment effectiveness and tolerance, especially concerning the outcome for children intolerant to methotrexate and the monitoring children in biotherapy. - This follow-up will also aid articulation between research and practice by proposing further studies in 3 areas: o nursing research and therapeutic education o study of bone microarchitecture o study of endothelial function and vascular abnormalities |
| Inclusion criteria | Children with Juvenile Idiopathic Arthritis (AJI) from the Auvergne-Loire region |
| Population type | |
| Age |
Early childhood (2 to 5 years) Childhood (6 to 13 years) Adolescence (13 to 18 years) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
Regional |
| French regions covered by the database |
Auvergne Rhône-Alpes |
| Detail of the geography area | Auvergne-Loire |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2011 |
| Size of the database | |
| Size of the database (number of individuals) |
< 500 individuals |
| Details of the number of individuals | 165 (08/2014) |
| Data | |
| Database activity |
Current data collection |
| 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 |
Health event/morbidity Health event/mortality Health care consumption and services |
| Care consumption (detail) |
Hospitalization Medical/paramedical consultation Medicines consumption |
| Procedures | |
| Data collection method | Follow-up log. Patient data will be sent by post to the coordinating centre (CHU de Clermont-Ferrand). Data input will be carried our annually Access designed for this purpose |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Follow-up will be for as long as possible with no definite duration. Follow-up initiated during childhood will continue to adulthood. |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/21544583 |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Considered publications: - 2012-2013: prévalence de la maladie et trajectoire initiale des patients - 2013: facteurs de risque de l’intolérance au methotrexate et devenir des enfants intolérants au methotrexate - 2014/2015: modifications thérapeutiques immédiatement au-décours de la transition |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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