Table 1.

SAGhE study: sources of identification of GH-treated patients

Country	Source of identification	Population-baseda or clinic-based	Identification (prospectiveb or retrospectivec)	Recording of GH patients on database	Estimated completeness of recruitmentd
Belgium	National population-based register	Population-based	Prospective	Compulsory	98.4%
France	National population-basedregister	Population-based	Prospective	Compulsory	100%
Germany	National industry database for 15 centres; clinical records as sole source for 1 centre and as additional source for 4 others (data in total from 16 of 70 known centres)	Clinic-based	Prospectively in industry database and retrospectively from clinicians	Voluntary	Leipzig, Magdeburg, Tübingen, Dresden, and Rosenheim: 100% Other centres: unknown, but recruitment entirely prospective
Italy	Regional databases (Piedmont and Campania), National Institute of Health Register (18 of 20 Italian regions), clinical notes from 2 centres in Rome	Partly populationbased (Piedmont and Campania and National Register); partly clinic-based	Prospective for databases Retrospective from clinical notes	Voluntary	Unknown, except Piedmont and Campania: 100% Rome: near 100%
The Netherlands	National population-based register	Populationbased	Prospective	Voluntary until 1997, compulsory after 1997	About 95% nationwide until 1997, 100% after 1997
Sweden	National population-based register	Populationbased	Prospective	Voluntary	99.5%
Switzerland	National registries for children with chronic renal failure and cancer Clinic databases and patient lists in 80% of Switzerland for all other diagnoses	Populationbased for renal failure and childhood cancer; clinicbased otherwise	Prospective for patients with renal failure and childhood cancer Retrospective as part of the SAGhE study for all other indications	Voluntary	Near to 100% of patients nationally with chronic renal failure and cancer; near to 100% for all other diagnoses in participating centres
UK England and Wales	National post-marketing surveillance study for all but 2 centres	Populationbased	Prospective	Voluntary	100% in some centres Others not known, but probably very high in post-marketing surveillance centres, less so in the 2 centres (of 21) using solely local registers
	Local clinical registries as sole source for 2 centres and as additional source for 2 others
Scotland	National post-marketing surveillance study	Clinic-based (all clinics except Dundee)	Prospective	Voluntary

^ai.e. identified all subjects who live in a defined geographic area.

^bi.e. recorded on a register at time of first GH treatment.

^ce.g. identification made from existing case notes at the time of the SAGhE study.

^di.e. percentage of patients treated in this population/clinic who were identified for the study.