The CRN-funded QUALIFY-US study, also known as the Quality of Life study, is wrapping up this month. Our researchers have asked us to share this message:
Dear young people living with cystinosis, dear parents,
We invite you to participate in the QUALIFY-US study. The aim of the study is to develop and validate a questionnaire that measures health-related quality of life in children, adolescents and young adults with cystinosis. A validated, disease-specific questionnaire is an important tool for improving patient-centred care or evaluating a (new) drug or therapy.
Over the past year, we have consulted with numerous families to ascertain their views on the key aspects of cystinosis, daily life and quality of life for those affected. This information has been used to formulate preliminary statements for a questionnaire, which have been refined after feedback from the pilot test.
During this final phase of the project (till 03/31/2025), we will be testing the questionnaire. We kindly request your help in this endeavor. We invite you to complete the questionnaire on two separate occasions (two weeks apart). It will take about 15 minutes to complete the questionnaire.
To participate in this study, please follow these links:
Patients (under 26 yrs old)
Your participation is essential for ensuring the reliability and validity of the results. The more participants we have during this phase, the more significant the results will be. Your experience and input are invaluable to this project.
Should you have any questions about the project, please do not hesitate to contact us (quality-of-life@uke.de).
We thank you in advance for your support.
Kind regards
Isabell Suck, Stefanie Witt, Julia Quitmann and Katharina Hohenfellner