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National registry of hemoglobinopathies in Greece: updated demographics, current trends in affected births, and causes of mortality

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Abstract

National registries constitute an invaluable source of information and contribute to the improvement of hemoglobinopathy management. Herein, we present the second updated report of the National Registry for Haemoglobinopathies in Greece (NRHG) and critically discuss the time trends in demographics, affected births, and causes of mortality. Thirty-eight Greek hemoglobinopathy units reported data from diagnosis to the last follow-up or death by retrospectively completing an electronic form. Four thousand thirty-two patients were eligible for inclusion; more than half of them had thalassaemia major. Compared to the previous report, a reduction in the total number of all hemoglobinopathies except for hemoglobinopathy “Η” was evident. The total number of affected births was also reduced; most of them were attributable to diagnostic errors and lack of awareness. Importantly, data on iron overload are reported for the first time; although most patients had low or moderate liver iron concentration (LIC) values, a non-negligible proportion of patients had high LIC. The burden due to heart iron overload was less prominent. Cardiac- and liver-related complications are the major causes of morbidity and mortality. From 2000 to 2015, a decrease in heart-related deaths along with an increase in liver-associated fatalities was observed. The Hellenic Prevention Program along with advances in chelation regimens and iron status monitoring have resulted in improved patient outcomes. The NRHG gives insight into the effectiveness of prevention programs, the therapeutic management of hemoglobinopathies and associated outcomes. NRHG may contribute to the formulation of a roadmap for hemoglobinopathies in Europe and promote the implementation of effective public health policies.

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Acknowledgements

The authors would like to thank the Hellenic Society of Hematology for the support in the project. The authors would also like to thank the patients, their families, and the medical and nursing staff of the participating centers. Furthermore, the authors thank Mrs. Maria Tsalkani and Dr. Ioannis Ntanasis-Stathopoulos for their valuable support.

Author information

Authors and Affiliations

  1. Thalassemia and Sickle Cell Disease Center, “Laiko” General Hospital, 16 Sevastoupoleos Street, GR 11526, Athens, Greece

    Ersi Voskaridou

  2. Thalassemia Unit, First Department of Pediatrics, Athens University Medical School, “Aghia Sophia” Children’s Hospital, Athens, Greece

    Antonis Kattamis

  3. Thalassemia Unit, “Aghia Sophia” Children’s Hospital, Athens, Greece

    Christina Fragodimitri

  4. Thalassemia Unit, Hematology Division, Department of Internal Medicine, Faculty of Medicine, University of Patras, Patras, Greece

    Alexandra Kourakli

  5. Thalassemia Unit, University General Hospital of Thessaloniki AHEPA, Thessaloniki, Greece

    Panagiota Chalkia

  6. General Hospital of Larissa, Larissa, Greece

    Michael Diamantidis

  7. Thalassemia Unit, First Department of Pediatrics, Aristotle University of Thessaloniki, Hippokratio General Hospital, Thessaloniki, Greece

    Efthymia Vlachaki & Marina Economou

  8. General Hospital “Agios Panteleimon” of Nikea, Piraeus, Greece

    Marouso Drosou

  9. General Hospital “Achilopouleio” of Volos, Volos, Greece

    Stilianos Lafioniatis

  10. University Hospital Hippocration of Athens, Athens, Greece

    Konstantinos Maragkos

  11. General Hospital “G. Gennimatas” Athens, Athens, Greece

    Fotini Petropoulou

  12. General Hospital of Karditsa, Karditsa, Greece

    Eftihios Eftihiadis

  13. Venizeleio Hospital of Heraklion, Heraklion, Greece

    Evangelos Klironomos

  14. General Hospital of Arta, Arta, Greece

    Freideriki Koutsouka

  15. General Hospital of Corfu, Corfu, Greece

    Konstantina Nestora

  16. General Hospital of Corinthos, Corinth, Greece

    Ioanna Tzoumari

  17. ”Karamandaneio” Children’s Hospital, Patras, Greece

    Ourania Papageorgiou

  18. General Hospital of Chania, Chania, Greece

    Artemis Basileiadi

  19. General Hospital Vostanion of Mytilini, Mytilini, Greece

    Ioannis Lafiatis

  20. General Hospital of Trikala, Trikala, Greece

    Efthimia Dimitriadou

  21. General Hospital “Agios Pavlos” of Thessaloniki, Thessaloniki, Greece

    Anastasia Kalpaka

  22. General Hospital of Athens “Evagelismos”, Athens, Greece

    Chrysoula Kalkana

  23. General Hospital of Xanthi, Xanthi, Greece

    Georgios Xanthopoulidis

  24. General Hospital of Kalamata, Kalamata, Greece

    Ioannis Adamopoulos

  25. General Hospital of Agrinio, Agrinio, Greece

    Panagiotis Kaiafas

  26. General Hospital of Serres, Serres, Greece

    Aikaterini Mpitzioni

  27. General Hospital of Kavala, Kavala, Greece

    Anastasia Goula

  28. General Hospital of Sparta, Sparta, Greece

    Ioannis Kontonis

  29. General Hospital of Piraeus “Tzaneio”, Piraeus, Greece

    Chrisoula Alepi

  30. University Hospital of Alexandroupoli, Alexandroupoli, Greece

    Athanasios Anastasiadis

  31. General Hospital of Katerini, Katerini, Greece

    Margarita Papadopoulou

  32. General Hospital of Rhodes, Rhodes, Greece

    Polixeni Maili

  33. General Hospital of Kos, Kos, Greece

    Dionisia Dionisopoulou

  34. Hospital “Chatzikostas” of Ioannina, Ioannina, Greece

    Antigoni Tsirka

  35. Paediatric Thalassemia Unit, University Hospital of Ioannina, Ioannina, Greece

    Alexandros Makis

  36. Children’s Hospital of Penteli, Athens, Greece

    Stavroula Kostaridou

  37. General Hospital of Athens “Aretaieio”, Athens, Greece

    Marianna Politou

  38. Department of Clinical Biochemistry, “Aghia Sophia” Children’s Hospital, Athens, Greece

    Ioannis Papassotiriou

Authors
  1. Ersi Voskaridou
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  2. Antonis Kattamis
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  3. Christina Fragodimitri
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  4. Alexandra Kourakli
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  5. Panagiota Chalkia
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  6. Michael Diamantidis
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  7. Efthymia Vlachaki
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  8. Marouso Drosou
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  9. Stilianos Lafioniatis
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  10. Konstantinos Maragkos
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  11. Fotini Petropoulou
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  12. Eftihios Eftihiadis
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  13. Marina Economou
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  14. Evangelos Klironomos
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  15. Freideriki Koutsouka
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  16. Konstantina Nestora
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  17. Ioanna Tzoumari
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  18. Ourania Papageorgiou
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  19. Artemis Basileiadi
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  20. Ioannis Lafiatis
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  21. Efthimia Dimitriadou
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  22. Anastasia Kalpaka
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  23. Chrysoula Kalkana
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  24. Georgios Xanthopoulidis
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  25. Ioannis Adamopoulos
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  26. Panagiotis Kaiafas
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  27. Aikaterini Mpitzioni
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  28. Anastasia Goula
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  29. Ioannis Kontonis
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  30. Chrisoula Alepi
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  31. Athanasios Anastasiadis
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  32. Margarita Papadopoulou
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  33. Polixeni Maili
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  34. Dionisia Dionisopoulou
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  35. Antigoni Tsirka
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  36. Alexandros Makis
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  37. Stavroula Kostaridou
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  38. Marianna Politou
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  39. Ioannis Papassotiriou
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Consortia

on behalf of the Greek Haemoglobinopathies Study Group

Contributions

E. Voskaridou was the principal investigator and designed the study. E. Voskaridou and I. Papassotiriou took primary responsibility for the paper and wrote it. All authors collected and analyzed the data. E. Voskaridou and I. Papassotiriou performed the statistical analyses. All authors contributed to the critical revision and approved the version to be published.

Corresponding author

Correspondence to Ersi Voskaridou.

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The study along with its ethical considerations was approved and supported by the Hellenic Society of Hematology.

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Informed consent was obtained from all individual participants or their next-of-kin included in the study.

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Voskaridou, E., Kattamis, A., Fragodimitri, C. et al. National registry of hemoglobinopathies in Greece: updated demographics, current trends in affected births, and causes of mortality. Ann Hematol 98, 55–66 (2019). https://doi.org/10.1007/s00277-018-3493-4

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  • DOI: https://doi.org/10.1007/s00277-018-3493-4

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