An observational study in Phenylketonuria (PKU), sponsored by Central Hospital, Nancy, France. Not yet recruiting. Open to participants aged 18 Years to 59 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-02-12.
Sponsored by Central Hospital, Nancy, France · Observational
Current recommendations are to maintain Phe levels \< 360 µmol/L throughout life (US consensus) or \< 600 µmol/L from the age of 12 (European consensus). Nevertheless, these recommendations do not take into account the individuality of each PKU patient who, in reality, reacts differently to Phe levels, with some patients with high levels (> 1200 µmol/L) escaping the neurological consequences of high Phe levels without this being well understood (OJRD 2018; 13: 149. Can untreated PKU patients escape from intellectual disability? A systematic review). It is therefore unclear what blood levels of phenylalanine are required during adolescence and adulthood to maintain an optimal cognitive, emotional and neurophysiological state in individual PKU patients, depending on their personal responsiveness to Phe.
183 studies on the registry are indexed under Phenylketonurias; 38 are open to participants now.
This study's planned enrollment of 30 is below the median of 40 across 60 observational studies indexed under Phenylketonurias.
Browse Phenylketonurias studies →Central Hospital, Nancy, France is the lead sponsor of 778 studies on the registry; 183 are open to participants now.
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The study will be offered to all adult subjects and their close relatives who know the person well as part of the follow-up for PKU at the Centre de Référence des maladies héréditaires du métabolisme at the Nancy CHRU.
This study will be offered to a second metabolic reference center.
Patients :
Relatives:
Exclusion Criteria:
Total score ASEBA
Total score ASEBA
Time frame: single time point upon the study enrollment
No study locations are listed for this record.
Plan to share: Undecided
This study is not yet recruiting, as verified in Nov 2025. You cannot join it, but the record below documents what was studied.
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Central Hospital, Nancy, France