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
This trial does not accept healthy volunteersQualifiers
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 population
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
Trial design
Design model
Other
Time perspective
Prospective
Treatments tested in this trial
Interview
BehavioralInterviews, presentation of questionnaires
Treatment groups
No treatment groups listed
Trial outcomes
Primary outcomes
1
HrQol
Hrqol
Time frame
through study completion, an average of 6 monthsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov