HRQoL and Financial Toxicity in Patients With VEXAS Syndrome

Launched by GRUPPO ITALIANO MALATTIE EMATOLOGICHE DELL'ADULTO · Oct 23, 2024

Keywords

ClinConnect Summary

This clinical trial, titled "HRQoL and Financial Toxicity in Patients with VEXAS Syndrome," is looking to understand how VEXAS syndrome affects the quality of life and overall well-being of patients. VEXAS syndrome is a rare condition caused by a specific genetic mutation, and the study aims to gather information about the symptoms patients experience and how these impact their daily lives. By learning more about these aspects, researchers hope to improve care and support for those living with this condition.

To participate in this trial, individuals need to be at least 18 years old and have a confirmed diagnosis of VEXAS syndrome, which means their genetic test has shown a specific mutation. Participants will be asked to provide their consent and share information about their health and experiences with the condition. It’s important to note that individuals with certain psychiatric disorders or major cognitive issues, or those who cannot read and understand the local language, will not be eligible for this study. This trial is not yet recruiting participants, but it aims to better understand the challenges faced by patients with VEXAS syndrome, including any financial burdens related to their health.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Adult patients (≥ 18 years old) with a confirmed diagnosis of VEXAS syndrome (UBA1 pathogenic mutation detected)
• • Written informed consent
• Exclusion Criteria:
• • - Having any kind of psychiatric disorder or major cognitive dysfunction.
• • Not able to read and understand local language