Epidemiological Data on Mast Cell Pathologies in France
- Conditions
- Mast Cell Disorder
- Registration Number
- NCT06186856
- Lead Sponsor
- Imagine Institute
- Brief Summary
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.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 13000
-
Children from birth and adults of any age
-
With one of the following mast cell diseases:
- 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
- Pre-mastocytosis or MMC (1 to 2 criteria according to WHO 2016 classification).
-
Managed in France in a rare disease reference, constitutive or competence center (CEREMAST) with DGOS labelization.
- Opposition of the patient or his/her parents to participation in the study.
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Epidemiology of mast cell disorders in France assessed by statistics on the prevalence on the various types of mast cell disorders Data 2010 - 2038 Epidemiology of mast cell disorders in France assessed by statistics on the incidence on the various types of mast cell disorders Data 2010 - 2038
- Secondary Outcome Measures
Name Time Method Characteristics of mast cell disease assessed by diagnostic criteria Data 2010 - 2038 Evolution of mast cell disease assessed by progression of skin lesions Data 2010 - 2038 Patient characteristics Data 2010 - 2038 age, gender, personal and family medical history
Characteristics of mast cell disease assessed by symptoms of disease Data 2010 - 2038 Evolution of mast cell disease assessed by progression to aggressive form Data 2010 - 2038 Patient follow-up assessed by overall survival Data 2010 - 2038 Types of treatment used on mastocytosis and any associated hemopathy Data 2010 - 2038 Evolution of mast cell disease assessed by appearance of new symptoms Data 2010 - 2038 Characteristics of mast cell disease assessed by type of disease Data 2010 - 2038 Evolution of mast cell disease assessed by associated hemopathy Data 2010 - 2038 Patient follow-up assessed by occurrence of other medical events in the patient Data 2010 - 2038 Tolerance of treatment used on mastocytosis and any associated hemopathy Data 2010 - 2038 Efficacy of treatment used on mastocytosis and any associated hemopathy Data 2010 - 2038
Trial Locations
- Locations (15)
CHU AMIENS site sud
🇫🇷Amiens, France
Chu Angers
🇫🇷Angers, France
Chu - Besancon
🇫🇷Besançon, France
Chu - Caen
🇫🇷Caen, France
Chu - Clermont Ferrand
🇫🇷Clermont-Ferrand, France
Chru Lille
🇫🇷Lille, France
Chu - Limoges
🇫🇷Limoges, France
Chu - La Timone - Marseille
🇫🇷Marseille, France
CHU de NANCY
🇫🇷Nancy, France
Chu - Nantes
🇫🇷Nantes, France
Hôpital Universitaire Pitié Salpetrière
🇫🇷Paris, France
Hôpital Necker-Enfants malades
🇫🇷Paris, France
Chu - Rennes
🇫🇷Rennes, France
CHU Réunion sud - Saint Pierre
🇫🇷Saint-Pierre, France
Chru - Strasbourg
🇫🇷Strasbourg, France