Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)

Recruiting

• Conditions: Homocystinuria

• Registration Number: NCT06556615
• Lead Sponsor: University Children's Hospital, Zurich

Brief 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.

Detailed Description

Not available

Study Timeline

• Study First Submitted: 2024-08-05
• Study First Submitted QC: 2024-08-13
• Study First Posted: 2024-08-16
• Study Start: 2025-01-15
• Status Verified: 2025-04
• Last Update Submitted: 2025-04-09
• Last Update Posted: 2025-04-10
• Primary Completion: 2025-09
• Study Completion: 2025-09

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 80

Inclusion Criteria

Not provided

Exclusion Criteria

Not provided

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
HrQol	through study completion, an average of 6 months	Hrqol

Trial Locations

Locations (1)

Kinderspital Zürich; 🇨🇭 Zurich, Switzerland