Table 2 Haemoglobinopathies: summary indicators in 10 European countries
From: Haemoglobinopathies in Europe: health & migration policy perspectives
Haemoglobinopathies report summary of indicators | |||||||||
|---|---|---|---|---|---|---|---|---|---|
Country | Perceived influence of migration on epidemiology | National/ local THAL registry | National/local SCD Registry | Structured national neonatal screening programme | Structured national antenatal screening programme | National/regional rare disease plan expected by | Haemoglobin disorders focused plans or focus in rare disease plans | Reimbursement of treatments | Country awareness |
Belgium | high influence | no | national | local | No rules | yes, work in progress | no | yes | low |
Cyprus | low influence traditionally, but increasing | national | no | no | Yes, by church and civil authorities (for the Turkish community) | yes approval planned in 2013 | yes | yes | very good |
France | high influence | national | local | National, targeted to the at risk population | Antenatal diagnosis available upon request | Yes (already implementd) | yes | partly | low |
Germany | high influence | no | no | no (trial Berlin) | no | yes, work in progress 2013 | N/A | partly | very low |
Greece | low influence: disorders linked to indigenous to population | National (on Haemoglobinopathies) | yes | yes | yes | yes | yes (for insured patients and asylum seekers) | high to some extent only | |
Italy | low influence: disorders linked to indigenous to population | regional (on Haemoglobinopathies) | local/regional | local/regional | yes, work in progress 2013 | N/A | yes (depending on the region) | generally low, high in specific regions | |
The Netherlands | high influence | local | local | yes | yes | yes, work in progress 2013 | N/A | yes | low |
Spain | high influence | National scientific registry not official | National paediatric scientific registry | regional | No rules | yes | no | In general yes, some regions partially | low |
Sweden | high influence | no | no | no | no | yes, work in progress 2013 | N/A | yes | very low |
UK | high influence | yes | yes | yes | yes | yes, work in progress 2013 | yes | yes | relatively high |