RecruitingNCT06657846

HRQoL and Financial Toxicity in Patients With VEXAS Syndrome

Health-Related Quality of Life and Financial Toxicity in Patients With VEXAS Syndrome: An Italian GIMEMA Study

Sponsor

Gruppo Italiano Malattie EMatologiche dell'Adulto

Enrollment

100 participants

Start Date

Nov 1, 2024

Study Type

OBSERVATIONAL

Conditions

VEXAS

Summary

This multicenter cross-sectional observational study aims to describe health-related quality of life (HRQoL) and symptom profiles of patients with VEXAS syndrome.

Eligibility

Min Age: 18 YearsMax Age: 99 Years

Plain Language Summary

Simplified for easier understanding

This study looks at quality of life and the financial burden experienced by people diagnosed with VEXAS syndrome — a rare inflammatory disease caused by a genetic mutation that affects blood cells and causes widespread inflammation. The study uses surveys to understand the real-world impact of living with this condition. **You may be eligible if...** - You are 18 or older - You have a confirmed diagnosis of VEXAS syndrome (detected through a specific gene mutation called UBA1) - You can provide written consent **You may NOT be eligible if...** - You have a psychiatric disorder or significant cognitive impairment - You cannot read or understand the local language used in the study Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(17)

Aou Ospedali Riuniti "Umberto I - G.M. Lancisi - G. Salesi"- Ancona - Sod Clinica Ematologica

Ancona, Italy

Asst Papa Giovanni Xxiii - Ospedale Di Bergamo - Sc Ematologia

Bergamo, Italy

Aou Di Bologna - Policlinico S. Orsola-Malpighi - Uoc Ematologia

Bologna, Italy

Asst Degli Spedali Civili Di Brescia - Uo Ematologia

Brescia, Italy

Istituto Di Candiolo - Fondazione Del Piemonte Per L'Oncologia - Irccs - Centro Trapianti

Candiolo, Italy

Aou Careggi - Firenze - Sod Ematologia

Florence, Italy

Fondazione Irccs Ca' Granda, Ospedale Maggiore Policlinico - Milano - Ematologia - Padiglione Marcora

Milan, Italy

Irccs Ospedale S. Raffaele - Milano - Uo Oncoematologia

Milan, Italy

Aou Federico Ii - Napoli - Uoc Ematologia

Naples, Italy

Aou Di Padova - Uo Ematologia

Padova, Italy

Fondazione Ircss Policlinico San Matteo - Pavia - Uo Ematologia

Pavia, Italy

Ausl Di Reggio Emilia - Arcispedale Santa Maria Nuova, Irccs - Sc Ematologia

Reggio Emilia, Italy

Aou Policlinico Tor Vergata - Roma - Uoc Trapianto Cellule Staminali

Roma, Italy

Ististuto Clinico Humanitas - Rozzano - Uo Oncologia Medica Ed Ematologia

Rozzano, Italy

Ente Ecclesiastico Casa Sollievo Della Sofferenza - San Giovanni Rotondo - Ematologia

San Giovanni Rotondo, Italy

Ospedale Mauriziano Umberto I - Torino - Scdu Ematologia

Torino, Italy

Aou Integrata Di Verona, Policlinico G.B. Rossi - Uoc Ematologia

Verona, Italy

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NCT06657846

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