Neoplasms

Immune System Diseases

All Conditions

Skin and Connective Tissue Diseases

Behaviors and Mental Disorders

Rare Diseases

Mastocytosis

Mastocytosis, Systemic

Neoplasms, Connective Tissue

Neoplasms, Connective and Soft Tissue

Neoplasms by Histologic Type

Mast Cell Activation Disorders

Quality of Life

Systemic Mastocytosis

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

Cristina BULAI LIVIDEANU, MD

Cristina BULAI LIVIDEANU, PH

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

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.

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

Evaluation of the Disability-Adjusted Life Year (DALY) on a Cohort of Patients With Indolent Systemic Mastocytosis (ISM)

DALY (Disability Adjusted Life Year): Its calculation consists of subtracting from life expectancy the number of years "lost" due to illness, disability or early death.

The quality of life of the included patients will be described with the The Mastocytosis Quality of Life Questionnaire (MC-QoL) which has scores from 0 to 100, where higher scores indicate higher health-related quality-of-life impairment

The frequency of various symptoms of mast cell activation will also be described.

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
Evaluation of the DALY on a Cohort of Patients With Indolent Systemic Mastocytosis	NCT05923372	Mastocytosis, I...		18 Years -	University Hospital, Toulouse
Evaluation of the DALY on a Cohort of Patients With Indolent Systemic Mastocytosis	NCT05923372	Mastocytosis, I...		18 Years -	University Hospital, Toulouse

Spots Global Cancer Trial Database for mastocytosis, indolent systemic