Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)
Recruiting
Observational Study
Homocystinuria
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 8 and older
- Sex
- Any
- Study type
- Observational
- Participants needed
- 80 (estimated)
- Sponsor
- University Children's Hospital, Zurich · Other
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About This Trial
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.
Trial Locations
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Eligibility Criteria
Inclusion criteria
* Patients with CBS deficiency from age 8 years
* Parents of patient(s) \< 18 years with cognitive impairment
* Parents of patients between age 4 and 7
* Experts on CBS deficiency
* Able to give informed consent as documented by signature
Exclusion criteria
\- Sufficient comman…
Contacts