We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US”
The research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions.
March 9, 2023
10:00 – 11:00 am Eastern
Join the Zoom meeting using this link
In partnership with the Department of Medical Psychology at Germany’s University Medical Center in Hamburg-Eppendorf, Dr. Julia Quitmann and team are actively recruiting participants for online interviews. The study focuses on health-related quality of life (HrQoL) and aims to learn more about the challenges and management of the disease and the needs of patients living with cystinosis.