FRESH-PEF236-en
French Langerhans cell histiocytosis registry
| Name | Country code |
|---|---|
| France | fr |
['Clinical data','Paraclinical data (non-biological)','Paraclinical data (non-biological) : Imaging','Paraclinical data (non-biological) : Function testing','Biological data','Socio-demographic data']
Individuals
| Topic | Vocabulary |
|---|---|
| Hematology | health theme |
| Paediatrics | health theme |
| Pulmonary medicine | health theme |
| Langerhans cell histiocytosis | cim-11 |
| Biological determinants: Genetic predisposition | health determinant |
| Biological determinants | health determinant |
{"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":"all cases of Langerhans cell histiocytosis in children under 15 years of age - proven by histology - defined by radio-clinical criteria if the diagnosis is validated by at least two physicians from the reference center on the basis of the following criteria: • Typical radiological lesions of the bone associated with diabetes insipidus ","clusion_E":"a malignant tumor, angiomatosis of the bones or an infection• Typical radiological lesions of the lung, demonstrating an association of cystic and nodular lesions"}
| Name |
|---|
| Jean;DONADIEU |
| Name | Role |
|---|---|
| ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP) | sponsor |
| Name |
|---|
| INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) |
| SANTE PUBLIQUE FRANCE |
| Agency name |
|---|
| CNIL |
| CESREES |
['']
['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']
Access on specific project only
Observational Study
| Start | End |
|---|---|
| 1994-01-01 | 3000-01-01 |
| Standard |
|---|
| ['D76.0 C960 C 961 D76.3'] |
{"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
| Name | |
|---|---|
| Jean;DONADIEU | jean.donadieu@aphp.fr |