Table 1.

Number of patients and patient demographics from 8 centres across Europe and Turkey all diagnosed by newborn screening.

PKU centres	Total	Treatment	Children (< 19 years)	Adults
Ankara Data collected in 2008 All patients born ≥ 1982	411	Low phe diet n = 411	n = 397 (219 boys, 178 girls) Age range: 1.7 months–17.9 years	14 (4 males, 10 females) Median age 22.9 years (range 19–26 years)
Birmingham Data collected in 2014 All children born ≥ 1996	85	BH4 + low phe diet n = 7 Low phe diet n = 78	n = 85 (46 boys, 39 girls) Age range: 1–17 years	n/a
Brussels Data collected in 2012	62	BH4 + low phe diet n = 12 Low phe diet n = 50	n = 40 (20 boys, 20 girls) Age range: 1 year, 3 months–17 years, 11 months	22 (7 males, 15 females) Median age 19 years, 7 months
Copenhagen Data collected in 2011 All children born ≥ 1995	85	Low phe diet n = 85	n = 85 (28 boys, 57 girls) Age range: 6–15 years	n/a
Groningen Data collected in 2011	78	Low phe diet n = 78a	n = 45 (23 boys, 22 girls)	33 (16 males, 17 females)
Madrid Data collected in 2012 All patients born ≥ 1979	83	BH4 only n = 11 BH4 + low phe diet n = 8 Low phe diet n = 64	n = 49 (21 males, 28 females) Age range: 1 year–< 19 years	34 (14 males, 20 females)
Munich Data collected in 2005–2006 All patients born ≥ 1967	32	Low phe diet n = 32	n/a	32 (12 males, 20 females)
Porto Data collected in 2010–2011. All patients born ≥ 1982	111	Low phe diet n = 111	n = 82 (51 boys, 31 girls) Age range: 1 year–< 19 years	29 (10 males, 19 females)
Totals	947	947	783	164

^a25 patients started BH4 for only a short time pre-assessment of overweight/obesity.