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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| face-to-face patients | During this visit, the investigator will complete the SMI score. |
| |
| Email patients | this visit at M0 + 7d will correspond to the emailing of the Mc_QoL and Burden_MCD questionnaires completed by the patient. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Score SMI | Behavioral | the investigator will complete the SMI score |
|
| Measure | Description | Time Frame |
|---|---|---|
| Quality of life of mast cell disorder patients | Quality of life is evaluated with the WHOQOL-bref questionary. This validated questionnaire in French assesses six dimensions of quality of life. | Baseline |
| Measure | Description | Time Frame |
|---|---|---|
| Mast cell disorder patient's life quality | Quality of life is evaluated with the WHOQOL-bref. | 6 months |
| Mast cell disorder patient's quality of life | Quality of life is evaluated with the WHOQOL-bref. |
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Inclusion Criteria:
Exclusion Criteria:
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Prospective, descriptive study, both transversal and longitudinal, open, monocentric, performed in 200 patients with mast cell disease and follow-up at the CEREMAST Toulouse
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| LIVIDEANU Cristina, MD | Contact | 0567778135 | +33 | livideanu.c@chu-toulouse.fr |
| NEGRETTO Mathilde | Contact | 05 67 77 81 68 | +33 | negretto.m@chu-toulouse.fr |
| Name | Affiliation | Role |
|---|---|---|
| LIVIDEANU Cristina, MD | University Hospital, Toulouse | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Cristina BULAI LIVIDEANU | Recruiting | Toulouse | France |
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| ID | Term |
|---|---|
| D008415 | Mastocytosis |
| D000090362 | Mast Cell Activation Disorders |
| ID | Term |
|---|---|
| D009372 | Neoplasms, Connective Tissue |
| D018204 | Neoplasms, Connective and Soft Tissue |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
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| 12 months |
| D007154 | Immune System Diseases |