Evaluation of the DALY on a Cohort of Patients With Indolent Systemic Mastocytosis

Last updated: July 10, 2023
Sponsor: University Hospital, Toulouse
Overall Status: Active - Recruiting

Phase

N/A

Condition

Warts

Treatment

N/A

Clinical Study ID

NCT05923372
RC31/23/0011
2023-A00178-37
  • Ages > 18
  • All Genders

Study Summary

Mastocytosis is a group of pathologies characterized by the accumulation and/or clonal proliferation of abnormal mast cells in various organs. The impact of mastocytosis on health, quality of life, the psychoaffective sphere and on professional life constitutes the burden of this disease. The DALY is the disability-adjusted life expectancy, which takes into account the life expectancy and the number of years "lost" due to illness, disability or early death. Due to the major impact of the disease this study evaluates the DALY in indolent mastocytosis patients

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Having expressed their non opposition to participate in this study
  • Diagnosed with indolent mastocytosis and cared for in the CEREMAST reference center inToulouse

Exclusion

Exclusion Criteria:

  • Patient with a form of mastocytosis other than MSI
  • Patient under legal protection, guardianship or curatorship

Study Design

Total Participants: 160
Study Start date:
May 01, 2023
Estimated Completion Date:
May 01, 2024

Study Description

Mastocytosis is a group of pathologies characterized by the accumulation and/or clonal proliferation of abnormal mast cells in various organs. Mastocytosis is a rare disease with an estimated prevalence of between 1/20,000 and 1/40,000. The impact of mastocytosis on health, quality of life, the psychoaffective sphere and on professional life constitutes the burden of this disease. This is probably important but very little studied so far. The DALY is the disability-adjusted life expectancy. It is calculated by subtracting from life expectancy the number of years "lost" due to illness, disability or early death.

Ignorance of the disease and diagnostic error cause significant distress in patients. In our clinical experience, the impact of the disease on the personal, social, and professional life of our patients is major. It therefore seems important to better specify the impact on the quality of life and the costs of this pathology. The main objective of this study is to evaluate the DALY in indolent mastocytosis patients from the CEREMAST reference center of the Toulouse University Hospital.

Connect with a study center

  • Centre de Référence des Mastocytoses, Service de Dermatologie, Hôpital Larrey, CHU Toulouse

    Toulouse, Haute-Garonne 31059
    France

    Active - Recruiting

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