title: A national registry of haemoglobinopathies in Greece: deducted demographics, trends in mortality and affected births.
abstract: Haemoglobinopathies are the most common hereditary disorders in Greece. Although there is a successful national prevention program, established 35 years ago, there is lack of an official registry and collection of epidemiological data for haemoglobinopathies. This paper reports the results of the first National Registry for Haemoglobinopathies in Greece (NRHG), recently organized by the Greek Society of Haematology. NRHG records all patients affected by thalassaemia major (TM), thalassaemia intermedia (TI), "H" Haemoglobinopathy (HH) and sickle cell disease (SCD). Moreover, data about the annual rate of new affected births along with deaths, between 2000 and 2010, are reported. A total of 4,506 patients are registered all over the country while the number of affected newborns was significantly decreased during the last 3 years. Main causes for still having affected births are: (1) lack of medical care due to financial reasons or low educational level; (2) unawareness of time limitations for prenatal diagnosis (PD); due either to obstetricians' malpractice or to delayed demand of medical care of couples at risk; and (3) religious, social or bioethical reasons. Cardiac and liver disorders consist main causes for deaths while life expectancy of patients lengthened after 2005 (p < 0.01). The NRHG of patients affected by haemoglobinopathies in Greece provides useful data about the haemoglobinopathies in the Greek population and confirms the efficacy of the National Thalassaemia Prevention Program on impressively decreasing the incidence of TM and sickle cell syndromes.
authors.affiliation: Thalassaemia Center, Laikon General Hospital, 16 Sevastoupoleos street, GR-11526, Athens, Greece. ersi.voskaridou@gmail.com
authors.forename: Ersi
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authors.lastname: Voskaridou
authors.forename: Vasilis
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authors.lastname: Ladis
authors.forename: Antonis
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authors.lastname: Kattamis
authors.forename: Eleni
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authors.lastname: Hassapopoulou
authors.forename: Marina
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authors.lastname: Economou
authors.forename: Alexandra
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authors.lastname: Kontogianni
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authors.lastname: Lafioniatis
authors.forename: Eleni
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authors.lastname: Vrettou
authors.forename: Freideriki
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authors.lastname: Koutsouka
authors.forename: Alexandros
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authors.lastname: Papadakis
authors.forename: Andreas
authors.initials: A
authors.lastname: Mihos
authors.forename: Eftihios
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authors.lastname: Eftihiadis
authors.forename: Kallistheni
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authors.lastname: Farmaki
authors.forename: Ourania
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authors.lastname: Papageorgiou
authors.forename: Georgia
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authors.lastname: Tapaki
authors.forename: Polixeni
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authors.lastname: Maili
authors.forename: Maria
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authors.lastname: Theohari
authors.forename: Marouso
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authors.lastname: Drosou
authors.forename: Zafeiris
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authors.lastname: Kartasis
authors.forename: Maria
authors.initials: M
authors.lastname: Aggelaki
authors.forename: Artemis
authors.initials: A
authors.lastname: Basileiadi
authors.forename: Ioannis
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authors.lastname: Adamopoulos
authors.forename: Ioannis
authors.initials: I
authors.lastname: Lafiatis
authors.forename: Athanasios
authors.initials: A
authors.lastname: Galanopoulos
authors.forename: Georgios
authors.initials: G
authors.lastname: Xanthopoulidis
authors.forename: Efthimia
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authors.lastname: Dimitriadou
authors.forename: Agapi
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authors.lastname: Mprimi
authors.forename: Maria
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authors.lastname: Stamatopoulou
authors.forename: Elanso Damba
authors.initials: ED
authors.lastname: Haile
authors.forename: Maria
authors.initials: M
authors.lastname: Tsironi
authors.forename: Athanasios
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authors.lastname: Anastasiadis
authors.forename: Maria
authors.initials: M
authors.lastname: Kalmanti
authors.forename: Margarita
authors.initials: M
authors.lastname: Papadopoulou
authors.forename: Evaggelia
authors.initials: E
authors.lastname: Panori
authors.forename: Peristera
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authors.lastname: Dimoxenou
authors.forename: Antigoni
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authors.lastname: Tsirka
authors.forename: Dimitrios
authors.initials: D
authors.lastname: Georgakopoulos
authors.forename: Pantelis
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authors.lastname: Drandrakis
authors.forename: Dionisia
authors.initials: D
authors.lastname: Dionisopoulou
authors.forename: Androniki
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authors.lastname: Ntalamaga
authors.forename: Ioannis
authors.initials: I
authors.lastname: Davros
authors.forename: Markisia
authors.initials: M
authors.lastname: Karagiorga
mesh_terms: D000025:Abortion, Eugenic / Q000523:psychology / Q000706:statistics & numerical data; D000755:Anemia, Sickle Cell / Q000191:economics / Q000453:epidemiology / Q000517:prevention & control; D002423:Cause of Death; D054242:Emigrants and Immigrants / Q000706:statistics & numerical data; D005307:Fertilization in Vitro; D005817:Genetic Counseling; D005820:Genetic Testing; D006115:Greece; D006453:Hemoglobinopathies / Q000191:economics / Q000453:epidemiology* / Q000401:mortality / Q000517:prevention & control; D006801:Humans; D015994:Incidence; D007231:Infant, Newborn; D010353:Patient Education as Topic; D011296:Prenatal Diagnosis; D012042:Registries; D012959:Socioeconomic Factors; D013789:Thalassemia / Q000191:economics / Q000453:epidemiology / Q000517:prevention & control