Evaluating the impact of indolent systemic mastocytosis on quality of life
Evaluation of the Disability-Adjusted Life Year (DALY) on a Cohort of Patients With Indolent Systemic Mastocytosis (ISM)
This study looks at how living with indolent systemic mastocytosis affects the daily lives and well-being of patients to better understand the challenges they face.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 160 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University Hospital, Toulouse Academic / other |
| Locations | 1 site (Toulouse, Haute-Garonne) |
| Trial ID | NCT05923372 on ClinicalTrials.gov |
What this trial studies
This observational study focuses on patients diagnosed with indolent systemic mastocytosis to evaluate the disability-adjusted life years (DALY) associated with the condition. It aims to quantify the impact of this rare disease on health, quality of life, and professional life, which has been under-researched. By calculating the DALY, the study seeks to highlight the years lost due to illness and disability, providing a clearer understanding of the burden of mastocytosis. The research is conducted at the CEREMAST reference center of the Toulouse University Hospital.
Who should consider this trial
Good fit: Ideal candidates for this study are patients diagnosed with indolent mastocytosis who are receiving care at the CEREMAST reference center in Toulouse.
Not a fit: Patients with forms of mastocytosis other than indolent systemic mastocytosis will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into the quality of life impacts of indolent systemic mastocytosis, potentially guiding better patient care and resource allocation.
How similar studies have performed: While the evaluation of DALY in mastocytosis is a novel approach, similar studies in other rare diseases have shown success in quantifying quality of life impacts.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Toulouse, Haute-Garonne
- Centre de Référence des Mastocytoses, Service de Dermatologie, Hôpital Larrey, CHU Toulouse — Toulouse, Haute-Garonne, France (Recruiting)
Study contacts
- Principal investigator: Cristina BULAI LIVIDEANU, MD — CHU Toulouse
- Study coordinator: Cristina BULAI LIVIDEANU, MD
- Email: livideanu.c@chu-toulouse.fr
- Phone: 0567778138
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.