FRESH-PEF74149-en
Adult and pediatric cohort with Still's disease (RaDiCo-ACOSTILL)
RaDiCo-ACOSTILL
| Name | Country code |
|---|---|
| France | fr |
['Clinical data','Paraclinical data (non-biological)','Paraclinical data (non-biological) : Imaging','Biological data','Participant-reported health data']
Individuals
| Topic | Vocabulary |
|---|---|
| Internal medicine | health theme |
| Paediatrics | health theme |
| Rheumatology | health theme |
| Adult-onset Still disease | cim-11 |
{"level_sex_clusion_I":[{"value":"Male","concept":{"vocab":"MeSH","vocabURI":"D008297"}},{"value":"Female","concept":{"vocab":"MeSH","vocabURI":"D005260"}}],"level_age_clusion_I":[{"value":"Infant, Newborn (birth to 28 days)","concept":{"vocab":"MeSH","vocabURI":"D007231"}},{"value":"Infant (28 days to 2 years)","concept":{"vocab":"MeSH","vocabURI":"D007223"}},{"value":"Child, Preschool (2 to 5 years)","concept":{"vocab":"MeSH","vocabURI":"D002675"}},{"value":"Child (6 to 12 years)","concept":{"vocab":"MeSH","vocabURI":"D002648"}},{"value":"Adolescent (13 to 18 years)","concept":{"vocab":"MeSH","vocabURI":"D000293"}},{"value":"Young Adult (19 to 24 years)","concept":{"vocab":"MeSH","vocabURI":"D055815"}},{"value":"Adult (25 to 44 years)","concept":{"vocab":"MeSH","vocabURI":"D000328"}},{"value":"Middle Aged (45 to 64 years)","concept":{"vocab":"MeSH","vocabURI":"D008875"}},{"value":"Aged (65 to 79 years)","concept":{"vocab":"MeSH","vocabURI":"D000368"}},{"value":"Aged, 80 and over (80 years and more)","concept":{"vocab":"MeSH","vocabURI":"D000369"}}],"level_type_clusion_I":"Patients population","level_type_clusion_other":"","clusion_I":"The inclusion criteria for the RaDiCo-ACOSTILL cohort are as follows: - Patients aged over 16 years (age >16 years) meeting the Yamaguchi diagnostic criteria or Fautrel criteria. - Patients aged 16 years or younger (age ≤16 years) fulfilling the 2001 criteria for systemic onset juvenile idiopathic arthritis according to the ILAR classification. - Having signed consent to participate in the cohort and for the collection of clinical and biological data; in accordance with regulations, for deceased minors or adults under legal protection, non-opposition from legal representatives will be sought. - Affiliated with the social security system. ","clusion_E":" Other causes of recurrent infectious fever (such as tuberculosis, toxoplasmosis, deep abscesses, viral infections, sepsis) or tumor-related fever (such as lymphomas). - Other defined inflammatory rheumatic diseases such as rheumatoid arthritis, psoriatic arthritis, spondyloarthropathies. - Autoimmune inflammatory diseases (systemic lupus erythematosus), granulomatosis (sarcoidosis, Blau syndrome), vasculitis (Behçet's disease, polyarteritis nodosa), polymyositis, and dermatomyositis. - Well-defined autoinflammatory syndromes with unambiguous mutations, such as familial Mediterranean fever, cryopyrinopathies, TRAPS, mevalonate kinase deficiency. - Known genetic macrophage activation syndromes. - Patients unable to understand the information leaflet and sign the informed consent form. - Patients not affiliated with the social security system."}
| Name |
|---|
| Bruno;FAUTREL |
| Sophie;GEORGIN-LAVIALLE |
| Name | Role |
|---|---|
| INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) | sponsor |
| Name |
|---|
| AGENCE NATIONALE DE LA RECHERCHE (ANR) |
| Agency name |
|---|
| CPP |
| CESREES |
['Through organizations (health services or institutions, schools, businesses, etc.)']
['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']
Access on specific project only
Observational Study
| Start | End |
|---|---|
| 2017-01-01 | 2027-01-01 |
| Standard |
|---|
| ['Drug Dictionary (DCIs)'] |
['Data Management Plan and Data Validation Plan. Continuous data management (automatic control rules and query system)']
Requests for access to RaDiCo-ACOSTILL data (aggregated or individual) will be reviewed by the Scientific Committee following the submission of a summary of a Specific Research Project, as defined in the Access Charter.
{"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
| Name | |
|---|---|
| Bruno;FAUTREL | bruno.fautrel@aphp.fr |
| Sophie;GEORGIN-LAVIALLE | sophie.georgin-lavialle@aphp.fr |