RecruitingNCT06186856

Epidemiological Data on Mast Cell Pathologies in France


Sponsor

Imagine Institute

Enrollment

13,000 participants

Start Date

Nov 1, 2024

Study Type

OBSERVATIONAL

Conditions

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.


Eligibility

Inclusion Criteria7

  • 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.

Exclusion Criteria1

  • \. Opposition of the patient or his/her parents to participation in the study.

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Locations(21)

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 - Poitiers

Poitiers, 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

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NCT06186856