SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

QUALIFY-US Study

Participants are needed for the testing of a newly developed questionnaire to measure the quality of life of patients with cystinosis.

The study coordinators are especially looking for parents of younger children (age 0 -7) and of young adults, as well as children and teenagers (age 8-17) who are willing to fill out the questionnaire themselves. They will need to comment on and evaluate the statements in the online questionnaire to ensure that all aspects that are important from the patient’s point of view are considered. The questionnaire takes about 45 minutes to complete.

The aim of the project, run by University Medical Center Hamburg-Eppendorf, is to develop and validate a questionnaire that measures the health-related quality of life (HRQOL) of children, adolescents, and young adults with cystinosis based on self-report and parent-report. A validated, disease-specific questionnaire is an important tool to improve patient-centered care or to evaluate a (new) drug or therapy.

Please click the link below to participate.

https://redcap-survey.fit.uke.de/surveys/?s=YHYNHT7L9R4W4C8A

QUALIFY-US Study

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