The Psychosocial Functioning of Adults With Phenylketonuria.
ConditionPhenylketonuria (PKU)
Trial statusNot yet recruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18-59
SponsorCentral Hospital, Nancy, France
About this trial
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.
Eligibility criteria
Qualifiers
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
Disqualifiers
Refusal or linguistic, physical or psychological incapacity to to participate in the study
Subjects under court protection
Subjects under guardianship or curatorship
Trial design
Treatments tested in this trial
- Not listed
Trial groups
30 Participants
are grouped into 2 trial groupsLocations
Sponsors and collaborators
Source ClinicalTrials.gov