A national registry of haemoglobinopathies in Greece: Deducted demographics, trends in mortality and affected births

• Published in: Annals of hematology 2012-09, Vol.91 (9), p.1451-1458
• Main Authors: Voskaridou, Ersi, Ladis, Vasilis, Kattamis, Antonis, Hassapopoulou, Eleni, Economou, Marina, Kourakli, Alexandra, Maragkos, Konstantinos, Kontogianni, Kalliopi, Lafioniatis, Stilianos, Vrettou, Eleni, Koutsouka, Freideriki, Papadakis, Alexandros, Mihos, Andreas, Eftihiadis, Eftihios, Farmaki, Kallistheni, Papageorgiou, Ourania, Tapaki, Georgia, Maili, Polixeni, Theohari, Maria, Drosou, Marouso, Kartasis, Zafeiris, Aggelaki, Maria, Basileiadi, Artemis, Adamopoulos, Ioannis, Lafiatis, Ioannis, Galanopoulos, Athanasios, Xanthopoulidis, Georgios, Dimitriadou, Efthimia, Mprimi, Agapi, Stamatopoulou, Maria, Haile, Elanso Damba, Tsironi, Maria, Anastasiadis, Athanasios, Kalmanti, Maria, Papadopoulou, Margarita, Panori, Evaggelia, Dimoxenou, Peristera, Tsirka, Antigoni, Georgakopoulos, Dimitrios, Drandrakis, Pantelis, Dionisopoulou, Dionisia, Ntalamaga, Androniki, Davros, Ioannis, Karagiorga, Markisia
• Format: Article
• Language: English
• Subjects: Abortion, Eugenic - psychology; Abortion, Eugenic - utilization; Anemia, Sickle Cell - economics; Anemia, Sickle Cell - epidemiology; Anemia, Sickle Cell - prevention & control; Cause of Death; Emigrants and Immigrants - statistics & numerical data; Fertilization in Vitro; Genetic Counseling; Genetic Testing; Greece; Hematology; Hemoglobinopathies - economics; Hemoglobinopathies - epidemiology; Hemoglobinopathies - mortality; Hemoglobinopathies - prevention & control; Humans; Incidence; Infant, Newborn; Medicine; Medicine & Public Health; Oncology; Original Article; Patient Education as Topic; Prenatal Diagnosis; Registries; Socioeconomic Factors; Thalassemia - economics; Thalassemia - epidemiology; Thalassemia - prevention & control
• ISSN: 0939-5555; 1432-0584
• DOI: 10.1007/s00277-012-1465-7

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 N ational 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