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Annals of Hematology

, Volume 91, Issue 9, pp 1451–1458 | Cite as

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

  • Ersi VoskaridouEmail author
  • Vasilis Ladis
  • Antonis Kattamis
  • Eleni Hassapopoulou
  • Marina Economou
  • Alexandra Kourakli
  • Konstantinos Maragkos
  • Kalliopi Kontogianni
  • Stilianos Lafioniatis
  • Eleni Vrettou
  • Freideriki Koutsouka
  • Alexandros Papadakis
  • Andreas Mihos
  • Eftihios Eftihiadis
  • Kallistheni Farmaki
  • Ourania Papageorgiou
  • Georgia Tapaki
  • Polixeni Maili
  • Maria Theohari
  • Marouso Drosou
  • Zafeiris Kartasis
  • Maria Aggelaki
  • Artemis Basileiadi
  • Ioannis Adamopoulos
  • Ioannis Lafiatis
  • Athanasios Galanopoulos
  • Georgios Xanthopoulidis
  • Efthimia Dimitriadou
  • Agapi Mprimi
  • Maria Stamatopoulou
  • Elanso Damba Haile
  • Maria Tsironi
  • Athanasios Anastasiadis
  • Maria Kalmanti
  • Margarita Papadopoulou
  • Evaggelia Panori
  • Peristera Dimoxenou
  • Antigoni Tsirka
  • Dimitrios Georgakopoulos
  • Pantelis Drandrakis
  • Dionisia Dionisopoulou
  • Androniki Ntalamaga
  • Ioannis Davros
  • Markisia Karagiorga
  • on behalf of the Greek Haemoglobinopathies Study Group
Original Article

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.

Keywords

Registry Thalassaemia Sickle cell disease Greece 

Notes

Acknowledgments

The authors would like to thank the patients, their families and the medical and nursing staff of the following centers: General Hospital of Athens "Laiko", Children’s University Hospital of Athens "Agia Sofia", University General Hospital of Thessaloniki AHEPA, University Hospital of Thessaloniki Ippokrateion, University Hospital of Patras, University Hospital Hippocration of Athens, University Hospital of Larissa, General Hospital "Achilopouleio" of Volos, "DRAKOPOULEIO" Blood Centre of Athens, University Hospital of Ioannina, Venizeleio Hospital of Heraklion, General Hospital of Corfu, General Hospital of Karditsa, General Hospital of Corinthos, "Karamandaneio" Children's Hospital, Children’s Hospital of Penteli, General Hospital of Rhodes, Children's Hospital "Pan. & Aglaia Kyriakou" of Athens, General Hospital "Agios Panteleimon" of Nikea, General Hospital of Chalkida, General Hospital "Agios Pavlos" of Thessaloniki, General Hospital of Chania, General Hospital of Kalamata, General Hospital Vostanion of Mytilini, General Hospital "G. Gennimatas" Athens, General Hospital of Xanthi, General Hospital of Trikala, General Hospital of Arta, General Hospital of Serres, Social Security Institute of Pireaus, General Hospital of Sparte, University Hospital of Alexandroupoli, University Hospital of Heraklio "PEPAGNI", General Hospital of Katerini, General Hospital of Kavala, General Hospital of Kozani "Mamatseio", Hospital "Chatzikostas" of Ioannina, General Hospital of Amaliada, General Hospital of Rethymno, General Hospital of Kos, General Hospital of Athens “Aretaieio”, General Hospital of Tripoli, Children’s Hospital of Athens "Agia Sofia". Furthermore, the authors want to especially thank Mrs. Maria Tsalkani for her effort to collect this large amount of data in a limited period of time.

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Copyright information

© Springer-Verlag 2012

Authors and Affiliations

  • Ersi Voskaridou
    • 1
    Email author
  • Vasilis Ladis
    • 2
  • Antonis Kattamis
    • 2
  • Eleni Hassapopoulou
    • 3
  • Marina Economou
    • 4
  • Alexandra Kourakli
    • 5
  • Konstantinos Maragkos
    • 6
  • Kalliopi Kontogianni
    • 7
  • Stilianos Lafioniatis
    • 8
  • Eleni Vrettou
    • 9
  • Freideriki Koutsouka
    • 10
  • Alexandros Papadakis
    • 11
  • Andreas Mihos
    • 12
  • Eftihios Eftihiadis
    • 13
  • Kallistheni Farmaki
    • 14
  • Ourania Papageorgiou
    • 15
  • Georgia Tapaki
    • 16
  • Polixeni Maili
    • 17
  • Maria Theohari
    • 18
  • Marouso Drosou
    • 19
  • Zafeiris Kartasis
    • 20
  • Maria Aggelaki
    • 21
  • Artemis Basileiadi
    • 22
  • Ioannis Adamopoulos
    • 23
  • Ioannis Lafiatis
    • 24
  • Athanasios Galanopoulos
    • 25
  • Georgios Xanthopoulidis
    • 26
  • Efthimia Dimitriadou
    • 27
  • Agapi Mprimi
    • 28
  • Maria Stamatopoulou
    • 29
  • Elanso Damba Haile
    • 30
  • Maria Tsironi
    • 31
  • Athanasios Anastasiadis
    • 32
  • Maria Kalmanti
    • 33
  • Margarita Papadopoulou
    • 34
  • Evaggelia Panori
    • 35
  • Peristera Dimoxenou
    • 36
  • Antigoni Tsirka
    • 37
  • Dimitrios Georgakopoulos
    • 38
  • Pantelis Drandrakis
    • 39
  • Dionisia Dionisopoulou
    • 40
  • Androniki Ntalamaga
    • 41
  • Ioannis Davros
    • 42
  • Markisia Karagiorga
    • 43
  • on behalf of the Greek Haemoglobinopathies Study Group
  1. 1.Thalassaemia CenterLaikon General HospitalAthensGreece
  2. 2.Children’s University Hospital of Athens ‘‘Agia Sofia’’AthensGreece
  3. 3.University General Hospital of Thessaloniki AHEPAThessalonikiGreece
  4. 4.University Hospital of Thessaloniki IppokrateionThessalonikiGreece
  5. 5.University Hospital of PatrasRioGreece
  6. 6.University Hospital Hippocration of AthensAthensGreece
  7. 7.University Hospital of LarissaLarissaGreece
  8. 8.General Hospital ‘‘Achilopouleio’’ of VolosVolosGreece
  9. 9.‘‘DRAKOPOULEIO’’ Blood Centre of AthensAthensGreece
  10. 10.University Hospital of IoanninaIoanninaGreece
  11. 11.Venizeleio Hospital of HeraklionHeraklionGreece
  12. 12.General Hospital of CorfuCorfuGreece
  13. 13.General Hospital of KarditsaKarditsaGreece
  14. 14.General Hospital of CorinthosCorinthGreece
  15. 15.‘‘Karamandaneio’’ Children’s HospitalPatrasGreece
  16. 16.Children’s Hospital of PenteliAthensGreece
  17. 17.General Hospital of RhodesRhodesGreece
  18. 18.Children’s Hospital ‘‘Pan. and Aglaia Kyriakou’’ of AthensAthensGreece
  19. 19.General Hospital ‘‘Agios Panteleimon’’ of NikeaPiraeusGreece
  20. 20.General Hospital of ChalkidaChalkidaGreece
  21. 21.General Hospital ‘‘Agios Pavlos’’ of ThessalonikiThessalonikiGreece
  22. 22.General Hospital of ChaniaChaniaGreece
  23. 23.General Hospital of KalamataKalamataGreece
  24. 24.General Hospital Vostanion of MytiliniMytiliniGreece
  25. 25.General Hospital ‘‘G. Gennimatas’’ AthensAthensGreece
  26. 26.General Hospital of XanthiXanthiGreece
  27. 27.General Hospital of TrikalaTrikalaGreece
  28. 28.General Hospital of ArtaArtaGreece
  29. 29.General Hospital of SerresSerresGreece
  30. 30.Social Security Institute of PireausPireausGreece
  31. 31.General Hospital of SpartaSpartaGreece
  32. 32.University Hospital of AlexandroupoliAlexandroupoliGreece
  33. 33.University Hospital of Heraklio ‘‘PEPAGNI’’HeraklionGreece
  34. 34.General Hospital of KateriniKateriniGreece
  35. 35.General Hospital of KavalaKavalaGreece
  36. 36.General Hospital of Kozani ‘‘Mamatseio’’KozaniGreece
  37. 37.Hospital ‘‘Chatzikostas’’ of IoanninaIoanninaGreece
  38. 38.General Hospital of AmaliadaAmaliadaGreece
  39. 39.General Hospital of RethymnoRethymnoGreece
  40. 40.General Hospital of KosKosGreece
  41. 41.General Hospital of Athens ‘‘Aretaieio’’AthensGreece
  42. 42.General Hospital of TripoliTripoliGreece
  43. 43.Children’s Hospital of Athens ‘‘Agia Sofia’’AthensGreece

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