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Table 1 Characteristics of PKU patients provided by the correspondents

From: Patient’s thoughts and expectations about centres of expertise for PKU

  Self-reported details of the PKU patients (n = 42) Details of the PKU children of the parents/caregivers (n = 62)a
Age
Median age 35 years 10 years
Age range 8–62 yearsb 0–60 years c,d
Gender
Male 21.4% (n = 9) 19.4% (n = 12)
Female 78.6% (n = 33) 80.6% (n = 50)
Treatment
Protein restricted diet with amino acid supplements/ GMP 85.7% (n = 36) 79% (n = 49)
Protein restricted diet without amino acid supplements/GMP 0% (n = 0) 4.8% (n = 3)
No protein restricted diet but amino acid supplements/GMP 4.8% (n = 2) 0% (n = 0)
No protein restricted diet, no amino acid supplements/GMP 9.5% (n = 4) 0% (n = 0)
BH4 (Sapropterin, Kuvan©) and a protein restricted diet with amino acid supplements/GMP 0% (n = 0) 6.5% (n = 4)
BH4 (Sapropterin, Kuvan©) and a protein restricted diet without amino acid supplements/GMP 0% (n = 0) 1.6% (n = 1)
BH4 (Sapropterin, Kuvan©), no protein restricted diet but amino acid supplements/GMP 0% (n = 0) 1.6% (n = 1)
BH4 (Sapropterin, Kuvan©), no protein restricted diet, no amino acid supplements/GMP 0% (n = 0) 4.8% (n = 3)
Other, namely… 0% (n = 0) 1.6% (n = 1)e
  1. aPlease note n = 56 of the responses were parents, n = 4 of the responses were grandparents who play a significant role in PKU care, n = 1 of the responses was a PKU patient and a parent of a PKU child, for n = 1 response the exact relationship to the PKU patient was unclear
  2. bRange 18–62 years, without 1 outlier of 8 years
  3. cRange 0–24 years, without 1 outlier of 60 years
  4. dn = 49;
  5. eBoth parent and child use a protein restricted diet with amino acid supplements