Phenylketonuria Clinical Trial
Official title:
5-year Follow-up of the Comparison of Life and Physical Health in Adult Patients With PKU and Healthy Age Matched Controls
Adult patients with phenylketonuria (PKU) at the age around 40 years belong to the first
patients generation with early treatment of the disease. PKU is caused by an inborn error of
the amino acid metabolism and the so far best suitable therapy is an early and strict diet,
which is low in phenylalanine.
Besides an early and continuously treatment in childhood, the nutritional and medical
support during adolescence and adulthood have been suggested to influence the long-term
physical health of adult PKU patients. As many adult PKU patients tend to neglect the
necessarily strict diet, they do not get a balanced diet. For PKU patients some nutrients,
which may be rare in an unbalanced diet, might help to improve health status, physical and
neurological performance and quality of life.
Information about the longitudinal development of the patients status and the influence of
the type of their medical care is not available. In this 5 year follow-up the investigators
aim to study the quality of life and the medical, nutritional and psychological status of
adult PKU patients, in whom corresponding information has already been collected previously.
n/a
Observational Model: Case Control, Time Perspective: Cross-Sectional
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