French Langerhans cell histiocytosis registry FRESH-PEF236-en Jean DONADIEU French Langerhans cell histiocytosis registry FRESH-PEF236-en 236 FRESH-PEF236 Jean DONADIEU ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP) Epidemiology France Portal (PEF) INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) SANTE PUBLIQUE FRANCE null Jean;DONADIEU Morbidity Incidence Prevalence Mortality Hematology Paediatrics Pulmonary medicine Langerhans cell histiocytosis Biological determinants: Genetic predisposition Biological determinants The public health objectives of this registry are to: - evaluate the incidence and prevalence of the disease - determine the risk factors of the disease manifesting and the possible prevention means - evaluate death rates in the population - The incidence and prevalence of long-term sequelae of this disease (pituitary affects – sclerosing cholangitis – respiratory failure – neurological and psychiatric problems) and to evaluate prevention methods - Evaluate the impact of therapies on the long-term progression of the disease - particularly mortality - and long-term sequelae - Enable the implementation of basic biological research on broad samples of patients whose progressive profiles have been determined. Such studies have two objectives: The determination of factors for the disease manifesting and the improvement of determining factors of the disease's progression - particularly the sequelae. null France Individuals Patients population Male Female Infant, Newborn (birth to 28 days) Infant (28 days to 2 years) Child, Preschool (2 to 5 years) Child (6 to 12 years) Young Adult (19 to 24 years) Adult (25 to 44 years) Middle Aged (45 to 64 years) Aged (65 to 79 years) Aged, 80 and over (80 years and more) 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 a malignant tumor, angiomatosis of the bones or an infection• Typical radiological lesions of the lung, demonstrating an association of cystic and nodular lesions Clinical data Biological data Socio-demographic data Paraclinical data (non-biological) : Imaging Paraclinical data (non-biological) : Function testing D76.0 C960 C 961 D76.3 Health event/morbidity Health event/mortality Health care consumption and services Other [1000-10000[ individuals Interview with the participant (including clinical) Observational Study Observational Study Morbidity registry 1454 (02/2011) Unknown Restricted access Access on specific project only