Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)
ConditionHomocystinuria
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age8+
SponsorUniversity Children's Hospital, Zurich
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.
Eligibility criteria
Qualifiers
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
Disqualifiers
None
Trial design
Treatments tested in this trial
- Interview
Treatment groups
No treatment groups listed
Sponsors and collaborators
Source ClinicalTrials.gov