About this trial
Mast cell disorders constitute a heterogeneous group of diseases, including :
* mastocytosis, i.e. cutaneous, indolent and severe forms of the disease, such as aggressive mastocytosis and mast cell leukemia) ; * mast cell-associated diseases such as mast cell activation syndrome (idiopathic, secondary or clonal), affecting both children and adults.
No epidemiological data are currently available in France.
In France, medical care of mast cell disorders is mainly provided by a rare disease network (CEREMAST), whose CRMR is located at the Necker Enfants Malades hospital in Paris. A total of 20 centers are located throughout France.
Our aim is to use this network to study patients suffering from these diseases. The overall aim of the study is to improve the understanding, diagnosis, prognosis, recognition and management of patients with mastocytosis.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Children from birth and adults of any age
Mastocytoses (cutaneous, systemic and sarcomas) Defined according to the WHO 2016 classification
Mast cell activation syndromes (idiopathic, secondary and clonal)
Other mast cell activation disorders (MCAD-NOS), Defined according to the Vienna classification
Disqualifiers
None
Trial population
Patient with mast cell diseases, managed in France in a rare disease reference center CEREMAST. 13000 pateints estimated.
Trial design
Cohort
Cross-sectional
Treatments tested in this trial
Not listed
Trial groups
Trial outcomes
Primary outcomes
Epidemiology of mast cell disorders in France assessed by statistics on the prevalence on the various types of mast cell disorders
Epidemiology of mast cell disorders in France assessed by statistics on the incidence on the various types of mast cell disorders
Secondary outcomes
Patient characteristics
age, gender, personal and family medical history
Characteristics of mast cell disease assessed by type of disease
Characteristics of mast cell disease assessed by diagnostic criteria
Characteristics of mast cell disease assessed by symptoms of disease
Sponsors and contacts
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