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Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)
Sponsor: University Children's Hospital, Zurich
Summary
Patients, parents of young / handicapped patients, and experts will be interviewed to collect contents relevant for HrQoL in CBS deficiency. Based on these data, a questionnaire will be developed and tested for comprehensibility in patients and parents of young / handicapped patients. A final questionnaire version will be tested for psychometric criteria including validity and reliability.
Official title: Development and Validation of a Standardized Assessment Instrument for Health-related Quality of Life (HrQoL) in Patients With Classical Homocystinuria
Key Details
Gender
All
Age Range
8 Years - Any
Study Type
OBSERVATIONAL
Enrollment
80
Start Date
2025-01-15
Completion Date
2025-09
Last Updated
2025-04-10
Healthy Volunteers
No
Conditions
Interventions
Interview
Interviews, presentation of questionnaires
Locations (1)
Kinderspital Zürich
Zurich, Switzerland