The Psychosocial Functioning of Adults With Phenylketonuria.
Starting soon
Conditions studied: Phenylketonuria (PKU)
In brief
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.
Key facts
- Study ID
- NCT07406009
- Run by
- Central Hospital, Nancy, France
- People needed
- 30
- Starts
- 2026-01-15
- Expected to finish
- 2027-06-15
- Last updated by the study team
- 2026-02-12
Who can join
Age: 18 and older, up to 59. Sex: any. Healthy volunteers: accepted.
You may qualify if…
- Patients :
- Age ≥ 18 years and < 59 years (age limit for ASEBA questionnaire)
- Person being monitored for PKU / HMP
- Relative living with the person
- Person who has received full information on the organization of the research and has not objected to the use of this data
- Compulsory membership of a social security scheme
- Relatives:
- Age ≥ 18 years
- Person who has received full information on the organization of the research and has not objected to the use of this data
- Compulsory membership of a social security scheme
You may not qualify if…
- Refusal or linguistic, physical or psychological incapacity to to participate in the study
- Subjects under court protection
- Subjects under guardianship or curatorship
Full record on ClinicalTrials.gov
Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.