Collecting data on mast cell disorders in France

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• CHU AMIENS site sud
  Amiens, France Recruiting
• Chu Angers
  Angers, France Recruiting
• Chu - Besancon
  Besançon, France Recruiting
• Chu - Caen
  Caen, France Recruiting
• Chu - Clermont Ferrand
  Clermont-Ferrand, France Recruiting
• CHU Grenoble
  Grenoble, France Recruiting

Study contacts

• Study coordinator: Julien Rossignol, Dr
• Email: julien.rossignol@aphp.fr
• Phone: +33 (0)1 44 49 40 00

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.