Metabolic Control and Patient Well-being in Phenylketonuria: do Guidelines Make a Difference?
NCT ID: NCT05128149
Last Updated: 2025-04-13
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
200 participants
OBSERVATIONAL
2021-11-15
2025-12-31
Brief Summary
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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
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Detailed Description
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Conditions
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Study Design
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COHORT
CROSS_SECTIONAL
Interventions
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no intervention
no intervention
Eligibility Criteria
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Inclusion Criteria
* Ability and willingness to answer the questionnaires and follow the study procedures
* Informed consent as documented by signature
Exclusion Criteria
* Pregnant patients or patients who have disclosed to their physician that they are planning a pregnancy in the near future
* Hyperphenylalaninaemia or mild forms of PKU or other inborn errors associated with elevated Phe but not requiring dietary and / or pharmacological treatment according to locally applied guidelines
* No inform
10 Years
ALL
No
Sponsors
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UChildrenVienna
UNKNOWN
University Children's Hospital Basel
OTHER
Insel Gruppe AG, University Hospital Bern
OTHER
University Children's Hospital, Zurich
OTHER
Responsible Party
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Locations
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University Childrens Hospital Zürich
Zurich, , Switzerland
Countries
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Central Contacts
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Facility Contacts
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Other Identifiers
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PKU_Guide
Identifier Type: -
Identifier Source: org_study_id
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