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Dietary treatment is tried in many late diagnosed phenylketonuria (PKU) patients. The reported effects vary widely, while the efforts for both patients and institutes are large.1 The double-blind, crossover study of Lee et al (see page 631) is the first to change experience into evidence-based medicine in late treated PKU patients with a a severe intellectual disabilty.1
In the UK, theoretically one would expect that there are some 2000 late treated PKU patients. However, only 133 were found in this study. Why? One of the reasons may …
Competing interests: None.