TABLE 1

Demographic characteristics and European Cystic Fibrosis Society (ECFS) Patient Registry participation in 34 European countries

Country	EU member	Population 2009^# [7]	GNI per capita 2009 $ [8]	Reporting data to the ECFS registry 2007–2010	Country registry coverage ≥85%	Longitudinal registry data ≥4 years	CF prevalence per 10 000^¶	Country group for analysis
Belgium	Yes	10.8	36 670	Yes	Yes	Yes	1.030	A
Czech Rep.	Yes	10.5	24 260	Yes	Yes	Yes	0.556	A
Denmark	Yes	5.5	39 240	Yes	Yes	Yes	0.761	A
France	Yes	62.6	34 610	Yes	Yes	Yes	0.750	A
UK	Yes	61.8	35 280	Yes	Yes	Yes	1.370	A
Netherlands	Yes	16.5	40 370	Yes	Yes	Yes	0.781	A
Germany	Yes	82.0	36 860	Yes	Yes	No	0.829	B
Hungary	Yes	10.0	19 530	Yes	Yes	Yes	0.409	B⁺
Ireland	Yes	4.5	33 560	Yes	Yes	No	2.980	B
Israel	No	7.6	26 530	Yes	Yes	No	0.564	B
Latvia	Yes	2.3	18 220	Yes	Yes	No	0.104	B
Moldova	No	4.1	3750	Yes	Yes	No	0.100	B
Serbia	No	7.3	11 000	Yes	Yes	No	0.166	B
Sweden	Yes	9.3	38 320	Yes	Yes	No	0.403	B
Slovenia	Yes	2.0	26 420	Yes	Yes^§	No	0.328	B
Slovakia	Yes	5.4	21 640	Yes	Yes	No	0.627	B
Austria	Yes	8.4	38 890	Yes	No	No	0.839	C
Switzerland	No	7.8	48 380	Yes	No	No	0.737	C
Cyprus	Yes	1.1	31 230	No	No	No	0.335	C
Spain	Yes	46.9	31 350	Yes	No	No	0.546	C
Finland	Yes	5.3	36 450	No	No	No	0.123	C
Greece	Yes	11.3	28 760	Yes	No	No	0.521	C
Italy	Yes	60.3	32 370	Yes	No	No	0.872	C
Luxembourg	Yes	0.5	52 190	No	No	No	0.431	C
Malta	Yes	0.4	23 730	No	No	No	0.579	C
Portugal	Yes	10.6	24 250	Yes	No	No	0.271	C
Bulgaria	Yes	7.6	13 520	No	No	No	0.226	D
Belarus	No	9.7	13 790	No	No	No	0.191	D
Estonia	Yes	1.3	19 350	No	No	No	0.618	D
Lithuania	Yes	3.3	18 540	No	No	No	0.130	D
Poland	Yes	38.1	18 250	No	No	No	0.256	D
Romania	Yes	21.5	15 340	No	No	No	0.106	D
Russian Fed.	No	141.8	18 860	Yes	No	No	0.191	D
Ukraine	No	46.0	7130	No	No	No	0.191	D

Country groups were defined as follows, group A: contributing data to the ECFS Patient Registry, coverage ≥85% of the cystic fibrosis (CF) population, longitudinal data linked at the patient level in the ECFS Patient Registry for at least 4 years. Group B: contributing data to the ECFS Patient Registry, coverage ≥85% of the CF population, longitudinal data for <4 years or no longitudinal data. Group C: not contributing data to the ECFS Patient Registry or coverage <85% of the CF population and gross national income (GNI) per capita ≥$23 000. Group D: not contributing data to the ECFS Patient Registry or coverage <85% of the CF population and GNI per capita <$23 000. ^#: in millions. ^¶: estimates of CF prevalence in individual countries was taken from Farrell [3], except for: Switzerland, where prevalence was based on the mean prevalence of the 27 European Union (EU) countries [3]; Moldova, Israel and Serbia, where prevalence was calculated using the number of CF patients reported to the ECFS registry and population of the country; Russian Federation, Belarus and Ukraine, where prevalence was reported by the Russian CF Patient Registry [9]. ⁺: Hungary was included in group B because the number of deaths were not systematically reported to the ECFS Patient Registry between 2007 and 2010. ^§: Slovenia had coverage at 75%. The GNI per capita was based on purchasing power parity in current international dollars ($).