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

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

NCT ID: NCT05923372

Condition: Mastocytosis, Indolent Systemic

Conditions: Official terms:
Mastocytosis
Mastocytosis, Systemic

Conditions: Keywords:
DALY
Mastocytosis
Quality of life

Study type: Observational

Overall status: Recruiting

Study design:

Time perspective: Other

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

Detailed 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.

Criteria for eligibility:

Study pop:
All patients with MSI, included in the CEREMAST register and who have given their consent to participate

Sampling method: Non-Probability Sample
Criteria:
Inclusion Criteria: - Having expressed their non opposition to participate in this study - Diagnosed with indolent mastocytosis and cared for in the CEREMAST reference center in Toulouse Exclusion Criteria: - Patient with a form of mastocytosis other than MSI - Patient under legal protection, guardianship or curatorship

Gender: All

Minimum age: 18 Years

Maximum age: N/A

Healthy volunteers: No

Locations:

Facility:
Name: Centre de Référence des Mastocytoses, Service de Dermatologie, Hôpital Larrey, CHU Toulouse

Address:
City: Toulouse
Zip: 31059
Country: France

Status: Recruiting

Contact:
Last name: Cristina BULAI LIVIDEANU, PH

Phone: 0567778138
Email: livideanu.c@chu-toulouse.fr

Start date: May 1, 2023

Completion date: May 1, 2024

Lead sponsor:
Agency: University Hospital, Toulouse
Agency class: Other

Source: University Hospital, Toulouse

Record processing date: ClinicalTrials.gov processed this data on November 12, 2024

Source: ClinicalTrials.gov page: https://clinicaltrials.gov/ct2/show/NCT05923372