Assessment of Burden Disease in Patients With Mast Cell Disorders

  • End date
    Sep 15, 2022
  • participants needed
  • sponsor
    University Hospital, Toulouse
Updated on 26 January 2021


The symptoms caused by mast cell disorders can have a significant impact on the state of health of individuals, constituting a real burden for them, and consequently altering their quality of life. It therefore seems important to clarify the impact on the quality of life, on the psycho-affective sphere, on professional life and on the direct and indirect costs caused by the disease, as well as on the "patient's remaining burden". It seems possible by a longitudinal study (patient follow-up over 1 year).

Primary objective is Assessment of quality of life in adult patient with mast cell diseases at M0.


Mast cell activation symptoms are due to the release of mast cell mediators after uncontrolled activation of mast cells. The release by mast cells of mast cell mediators (tryptase, histamine, prostaglandins, serotonin) results in mast cell activation symptoms, found in mast cell activation syndrome but also in mastocytosis. These symptoms interested the skin, gastrointestinal gut, pulmonary, cardiovascular and neuropsychiatric organs, etc.

In mastocytosis, along with these symptoms of mast cell activation, the infiltration of different organs by abnormal mast cells produces many clinical signs related to the excess of monoclonal mast cells present in the organs.

According to our clinical experience, the impact of mast cell disorder on various dimensions of life, including economic life, seems important, but it has never accurately evaluated.

Condition Dermatosis, Urticaria Pigmentosa, Mastocytosis, Congenital Skin Diseases, Cutaneous, Skin Conditions
Treatment Score SMI
Clinical Study IdentifierNCT04615663
SponsorUniversity Hospital, Toulouse
Last Modified on26 January 2021


Yes No Not Sure

Inclusion Criteria

Is your age between 1 yrs and 1 yrs?
Gender: Male or Female
Do you have any of these conditions: Skin Conditions or Cutaneous or Mastocytosis or Urticaria Pigmentosa or Dermatosis or Congenital Skin Diseases?
Adult patient (> 18 years old) with confirmed mast cell disorder according to international criteria
Patient affiliated to social security regime

Exclusion Criteria

Patient under legal protection (guardianship, curators or court order)
Patient does not speak French
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