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Collecting data on mast cell disorders in France

Epidemiological Data on Mast Cell Pathologies in France

Observational Imagine Institute · NCT06186856

This study is collecting information about mast cell disorders, like mastocytosis, in France to better understand and manage these conditions for patients.

Quick facts

Study typeObservational
Enrollment13000 (estimated)
SexAll
SponsorImagine Institute Academic / other
Locations21 sites (Amiens and 20 other locations)
Trial IDNCT06186856 on ClinicalTrials.gov

What this trial studies

This observational study aims to gather epidemiological data on various mast cell disorders, including mastocytosis and mast cell activation syndromes, in France. It leverages a network of rare disease centers known as CEREMAST to identify and study patients affected by these conditions. The study seeks to enhance understanding, diagnosis, prognosis, and management of mast cell diseases, which currently lack comprehensive epidemiological data in the country.

Who should consider this trial

Good fit: Ideal candidates include children and adults diagnosed with mast cell diseases, such as mastocytosis or mast cell activation syndromes, who are receiving care in designated rare disease centers in France.

Not a fit: Patients who do not have a diagnosed mast cell disorder or those who oppose participation in the study may not benefit.

Why it matters

Potential benefit: If successful, this study could lead to improved diagnosis and management strategies for patients with mast cell disorders.

How similar studies have performed: While there is limited epidemiological data on mast cell disorders in France, similar studies in other regions have successfully improved understanding and management of these conditions.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

1. Children from birth and adults of any age
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:

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

Where this trial is running

Amiens and 20 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Mast Cell DisorderMast Cell DiseaseMastocytosismast cell-associated diseases
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.