Epidemiological Data on Mast Cell Pathologies in France
NCT ID: NCT06186856
Last Updated: 2025-12-19
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
13000 participants
OBSERVATIONAL
2024-01-01
2038-12-31
Brief Summary
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* 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
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Conditions
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Keywords
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Study Design
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COHORT
CROSS_SECTIONAL
Study Groups
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Patients
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
2. 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).
3. Managed in France in a rare disease reference, constitutive or competence center (CEREMAST) with DGOS labelization.
Exclusion Criteria
ALL
No
Sponsors
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Imagine Institute
OTHER
Responsible Party
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Locations
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CHU AMIENS site sud
Amiens, , France
Chu Angers
Angers, , France
Chu - Besancon
Besançon, , France
Chu - Caen
Caen, , France
Chu - Clermont Ferrand
Clermont-Ferrand, , France
CHU Grenoble
Grenoble, , France
Chru Lille
Lille, , France
Chu - Limoges
Limoges, , France
Hospices Civils de Lyon
Lyon, , France
Chu - La Timone - Marseille
Marseille, , France
CHU de Montpellier
Montpellier, , 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
CHU Purpan
Toulouse, , France
CHU de TOURS
Tours, , France
Countries
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Central Contacts
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Facility Contacts
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Clément GOURGUECHON, Dr
Role: primary
Christian Lavigne, Dr
Role: primary
Florence CASTELAIN, Dr
Role: primary
Gandhi DAMAJ, Pr
Role: primary
Yann OLLIVIER, Dr
Role: backup
Olivier TOURNILHAC, Pr
Role: primary
Laurence BOUILLET, Pr
Role: primary
David LAUNAY, Pr
Role: primary
Marie-Pierre GOURIN, Dr
Role: primary
Maël Heiblig, Dr
Role: primary
Caroline GAUDY, Pr
Role: primary
Philippe GUILPAIN, Pr
Role: primary
Roland JAUSSAUD, Pr
Role: primary
Antoine NEEL, Pr
Role: primary
Stephane Barete, Dr
Role: primary
Julien Rossignol, Dr
Role: primary
Hassiba Bouktit
Role: backup
Edwige LE MOUEL, Dr
Role: primary
Quentin CABRERA, Dr
Role: primary
Rose-Marie JAVIER, Dr
Role: primary
Cristina LIVIDEANU, Dr
Role: primary
Cyrille HOARAU, Dr
Role: primary
Other Identifiers
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HJ-22-DATAMAST
Identifier Type: -
Identifier Source: org_study_id