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Informational Q&A: Cystinosis QoL Study
March 9, 2023 @ 10:00 am - 11:00 am
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.
Both cystinosis patients and parents may be eligible. Additional information is available here or contact Isabell Suck or Stefanie Witt at quality-of-life@uke.de.
