Evaluation of the DALY on a Cohort of Patients With Indolent Systemic Mastocytosis (DALY-MAST)

Toulouse University Hospital

Status: Enrolling

Conditions: Mastocytosis, Indolent Systemic

Study type: Observational

Funder types: Other

Identifiers

NCT05923372

2023-A00178-37 (Other Identifier)

RC31/23/0011

Details and patient eligibility

About

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

Full 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.

Enrollment: 160 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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

Trial design

160 participants in 1 patient group

Patients with indolent systemic mastocytosis (IMS)

Description:

Patients with IMS, included in the CEREMAST registry and who have given their consent to participate