An observational study in Phenylketonurias, sponsored by University Children's Hospital, Zurich. Recruiting at 1 site in Switzerland. Open to participants aged 10 Years and older. Per ClinicalTrials.gov, last updated 2025-04-13.
Sponsored by University Children's Hospital, Zurich · Observational
Treatment of PKU implies for most patients that with strict adherence to dietary treatment they can achieve excellent neurocognitive outcome. Dietary treatment, though, is hard to comply to every day and with every single meal. Unsurprisingly, health-related quality of life (HrQol) is negatively affected if patients have to follow a dietary regime of this kind. Adherence to treatment in PKU is very variable. Factors of significant impact on adherence to treatment and well-being in chronic disease such as self-efficacy or parenting stress have not yet been widely investigated in PKU patients.
The ideal treatment prescription (and guideline) recommends as much as necessary and as little as possible, based on the best evidence available. Patients should neither be deprived of treatment options nor be exposed to overtreatment.
This study investigates adherence, metabolic control, HrQol in PKU patients treated by centres which follow different guidelines
183 studies on the registry are indexed under Phenylketonurias; 38 are open to participants now.
This study's planned enrollment of 200 is above the median of 40 across 60 observational studies indexed under Phenylketonurias.
Browse Phenylketonurias studies →University Children's Hospital, Zurich is the lead sponsor of 92 studies on the registry; 23 are open to participants now.
Counted across the registry records on this site, refreshed daily.
PKU patients > 10 years and their parents
Inclusion Criteria:- Patients with PKU from age 10 years requiring dietary and / or pharmacological treatment according to locally applied guidelines
Exclusion criteria for patients and parents :
no intervention
Phe values
biochemical marker for PKU
Time frame: report on measurements from past 24 months
Health-related quality of life
PKU-QoL© Questionnaire
Time frame: one hour
Self-efficacy
10 items Self-efficacy scale (Schwarzer\& Jerusalem)
Time frame: one hour
Burden on family (patients from 10-18 years)
Revised Impact on Family Scale
Time frame: one hour
Plan to share: No
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University Children's Hospital, Zurich