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

Author

Voskaridou, Ersi, Kattamis, Antonis, Fragodimitri, Christina, Kourakli, Alexandra, Chalkia, Panagiota, Diamantidis, Michael, Vlachaki, Efthymia, Drosou, Marouso, Lafioniatis, Stilianos, Maragkos, Konstantinos, Petropoulou, Fotini, Eftihiadis, Eftihios, Economou, Marina, Klironomos, Evangelos, Koutsouka, Freideriki, Nestora, Konstantina, Tzoumari, Ioanna, Papageorgiou, Ourania, Basileiadi, Artemis, Lafiatis, Ioannis, Dimitriadou, Efthimia, Kalpaka, Anastasia, Kalkana, Chrysoula, Xanthopoulidis, Georgios, Adamopoulos, Ioannis, Kaiafas, Panagiotis, Mpitzioni, Aikaterini, Goula, Anastasia, Kontonis, Ioannis, Alepi, Chrisoula, Anastasiadis, Athanasios, Papadopoulou, Margarita, Maili, Polixeni, Dionisopoulou, Dionisia, Tsirka, Antigoni, Makis, Alexandros, Kostaridou, Stavroula, Politou, Marianna, Papassotiriou, Ioannis, and on behalf of the Greek Haemoglobinopathies Study Group

Published
2019
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2. Real‐world complication burden and disease management paradigms in transfusion‐related β‐thalassaemia in Greece: Results from ULYSSES, an epidemiological, multicentre, retrospective cross‐sectional study

Author

Kattamis, Antonis, primary, Voskaridou, Ersi, additional, Delicou, Sophia, additional, Klironomos, Evangelos, additional, Lafiatis, Ioannis, additional, Petropoulou, Foteini, additional, Diamantidis, Michael D., additional, Lafioniatis, Stylianos, additional, Evliati, Loukia, additional, Kapsali, Eleni, additional, Karvounis‐Marolachakis, Kiki, additional, Timotheatou, Despoina, additional, Deligianni, Chrysoula, additional, Viktoratos, Panagiotis, additional, and Kourakli, Alexandra, additional

Published
2023
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3. Predisposing factors for advanced liver fibrosis in patients with sickle cell disease.

Author

Manganas, Konstantinos, Delicou, Sophia, Xydaki, Aikaterini, Kourakli, Alexandra, Evliati, Loukia, Vlachaki, Efthymia, Klironomos, Evangelos, Diamantidis, Michail, Lafiatis, Ioannis, Kattamis, Antonios, and Koskinas, John

Subjects
HEPATIC fibrosis, SICKLE cell anemia, BLOOD transfusion, DISEASE complications, FIBROSIS, IRON overload, PAROXYSMAL hemoglobinuria
Abstract

Summary: Sickle cell disease (SCD) is one of the most common monogenic disorders worldwide and liver complications are common in this group of patients. Our study aims to highlight the prevalence of chronic liver complications and the main predisposing factors for advanced liver fibrosis in SCD patients. For this purpose, 219 patients from eight Thalassemia and Sickle Cell Units across Greece enrolled in our study and history of liver related disease complications was recorded, as well as a full laboratory and imaging analysis concerning their liver function. 13.6% of the patients had advanced liver fibrosis. The presence of liver fibrosis was significantly correlated with advanced age, male gender, cholelithiasis and higher LDH, γ‐GT, INR, direct and indirect bilirubin levels. These patients had exhibited significantly more episodes of liver crises and acute intrahepatic cholestasis. No correlation was observed with right heart failure or previous viral hepatitis. Patients with advanced liver fibrosis were receiving a more intensive transfusion therapy for a longer period of time and had higher Liver Iron Concentration levels. Our study shows that liver complications and cirrhosis is a significant cause of morbidity in patients with SCD and it is primarily associated with intravascular hemolysis and vaso‐occlusive phenomena and secondarily with iron overload. [ABSTRACT FROM AUTHOR]

Published
2023
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4. Real-World Data on the Use of Luspatercept in Greek Patients with Transfusion Dependent Thalassemia

Author

Delaporta, Polyxeni, primary, Kourakli, Alexandra, additional, Delicou, Sophia, additional, Diamantidis, Michael D., additional, Kalkana, Chrysoula, additional, Vlachaki, Efthymia, additional, Eftychiadis, Eftychios, additional, Lafiatis, Ioannis, additional, Pantelidou, Despoina, additional, Symeonidis, Argiris, additional, Lazaris, Vasileios, additional, Xydaki, Aikaterini, additional, Manafas, Achilles, additional, Evliati, Loukia, additional, Klonizakis, Filippos, additional, Manika, Ioanna, additional, Papadopoulou, Despoina, additional, Chatzieleftheriou, Marianna, additional, Toutoudaki, Konstantina, additional, Kyriakopoulou, Dimitra, additional, and Kattamis, Antonis, additional

Published
2022
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5. Liver complications in greek patients with sickle cell disease: a multicenter retrospective analysis from eight thalassemia and sickle cell units across Greece

Author

Manganas, Konstantinos, primary, Delicou, Sophia, additional, Xydaki, Aikaterini, additional, Kourakli, Alexandra, additional, Evliati, Loukia, additional, Vlahaki, Euthimia, additional, Klironomos, Evangelos, additional, Diamantidis, Michail, additional, Lafiatis, Ioannis, additional, Kattamis, Antonis, additional, and Koskinas, Ioannis-Georgios, additional

Published
2022
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6. ERN-EuroBloodNet European Registry of Patients Affected by Red Blood Cell Disorders and COVID-19

Author

Velasco, Pablo, primary, Longo, Filomena, additional, Piolatto, Andrea, additional, Bardón-Cancho, Eduardo J., additional, Ponce-Salas, Beatriz, additional, Flevari, Pagona, additional, Voskaridou, Ersi, additional, Biemond, Bart J., additional, Nur, Erfan, additional, Delaporta, Polyxeni, additional, Besse-Hammer, Tatiana, additional, Ruiz-Llobet, Anna, additional, Raso, Simona, additional, Spasiano, Anna, additional, Guerzoni, Maria Elena, additional, Beneitez-Pastor, David, additional, Dedeken, Laurence, additional, Pepe, Alessia, additional, Rosso, Rosamaria, additional, Kunz, Joachim B., additional, de Montalembert, Mariane, additional, Campisi, Saveria, additional, Glenthøj, Andreas, additional, Gonzalez Urdiales, Paula, additional, Benghiat, Fleur Samantha, additional, Azerad, Marie-Agnès, additional, Saunders, Christopher J., additional, Ferreira Faria, Teresa, additional, Casini, Tommaso, additional, Bagnato, Sabrina, additional, Van de Velde, Ann, additional, Labarque, Veerle, additional, Bertoni, Elisa, additional, Van Damme, An, additional, Diamantidis, Michael D., additional, Russo, Roberta, additional, Stiakaki, Eftichia, additional, Quota, Alessandra, additional, Christou, Soteroula, additional, Teles, Maria Jose, additional, Lafiatis, Ioannis, additional, Kerkhoffs, Jean-Louis, additional, Argüello Marina, María, additional, Lorite, Mikael, additional, Rodriguez, Alexis, additional, Iolascon, Achille, additional, Taher, Ali T., additional, Colombatti, Raffaella, additional, Roy, Noemi, additional, and Mañú Pereira, Maria Del Mar, additional

Published
2021
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7. A national registry of haemoglobinopathies in Greece: Deducted demographics, trends in mortality and affected births

Author

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, and on behalf of the Greek Haemoglobinopathies Study Group

Published
2012
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8. An Epidemiological, Retrospective Cross-Sectional Study to Capture the Real-World Complication Burden, and Disease Management Paradigms in Transfusion-Dependent Beta-Thalassemia Adults in Greece: Interim Results of the Ulysses Study

Author

Kattamis, Antonis, primary, Voskaridou, Ersi, additional, Delicou, Sophia, additional, Klironomos, Evangelos, additional, Lafiatis, Ioannis, additional, Petropoulou, Fotini, additional, Diamantidis, Michael D., additional, Lafioniatis, Stylianos, additional, Evliati, Loukia, additional, Kapsali, Eleni, additional, Karvounis-Marolachakis, Kiki, additional, Timotheatou, Despoina, additional, and Kourakli, Alexandra, additional

Published
2020
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9. Sickle-Cell Disease in Greece: Patient Reported Outcomes Related to Clinical Complications, Treatment Choices and Attitudes, Beliefs and Trends Affecting Potential Participation in Clinical Trials - a Greek National Multicentric Study

Author

Delicou, Sophia Diamantidis, Michael D. Manganas, Konstantinos and Eftychiadis, Eftychios Pantelidou, Despoina Kourakli, Alexandra Vlachaki, Efthymia Evliati, Loukia Lafiatis, Ioannis Klironomos, Evangelos Kyriakopoulou, Dimitra Xydaki, Aikaterini Bartzi, Vassiliki Papadopoulou, Despoina Lazaris, Vasileios Apostolou, Chrysoula Kattamis, Antonis Symeonidis, Argiris

Published
2019

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

Author

Voskaridou, Ersi Kattamis, Antonis Fragodimitri, Christina and Kourakli, Alexandra Chalkia, Panagiota Diamantidis, Michael and Vlachaki, Efthymia Drosou, Marouso Lafioniatis, Stilianos and Maragkos, Konstantinos Petropoulou, Fotini Eftihiadis, Eftihios and Economou, Marina Klironomos, Evangelos Koutsouka, Freideriki and Nestora, Konstantina Tzoumari, Ioanna Papageorgiou, Ourania and Basileiadi, Artemis Lafiatis, Ioannis Dimitriadou, Efthimia and Kalpaka, Anastasia Kalkana, Chrysoula Xanthopoulidis, Georgios Adamopoulos, Ioannis Kaiafas, Panagiotis Mpitzioni, Aikaterini Goula, Anastasia Kontonis, Ioannis Alepi, Chrisoula Anastasiadis, Athanasios Papadopoulou, Margarita and Maili, Polixeni Dionisopoulou, Dionisia Tsirka, Antigoni and Makis, Alexandros Kostaridou, Stavroula Politou, Marianna and Papassotiriou, Ioannis Greek Haemoglobinopathies Study

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 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.

Published
2019

11. Hepatitis C Virus Infection, but Not Hepatic Iron Overload Is the Dominant Risk Factor for the Manifestation of Hepatocellular Carcinoma Among Greek Thalassemic Patients

Author

Kourakli, Alexandra Diamantidis, Michael D. Skafidas, Myrto-Evangelia Delicou, Sophia Pantelidou, Despoina and Fragodimitri, Christina Vlachaki, Efthymia Lafioniatis, Stylianos Petropoulou, Fotini Eftychiadis, Eftychios and Kapsali, Eleni Kalpaka, Anastasia Zissis, Christos and Koutsouka, Frideriki Vasileiadi, Artemis Goula, Anastasia and Giasari, Panagiota Katsatou, Marianna Lafiatis, Ioannis and Klironomos, Evangelos Kaiafas, Panagiotis Kyriacopoulou, Dimitra and Lazaris, Vasileios Maragkos, Konstantinos Fotiou, Paraskevi and Chalkia, Panagiota Schiza, Vasiliki Kattamis, Antonis and Symeonidis, Argiris

Published
2018

12. Sickle-Cell Disease in Greece: Patient Reported Outcomes Related to Clinical Complications, Treatment Choices and Attitudes, Beliefs and Trends Affecting Potential Participation in Clinical Trials - a Greek National Multicentric Study

Author

Delicou, Sophia, primary, Diamantidis, Michael D., additional, Manganas, Konstantinos, additional, Eftychiadis, Eftychios, additional, Pantelidou, Despoina, additional, Kourakli, Alexandra, additional, Vlachaki, Efthymia, additional, Evliati, Loukia, additional, Lafiatis, Ioannis, additional, Klironomos, Evangelos, additional, Kyriakopoulou, Dimitra, additional, Xydaki, Aikaterini, additional, Bartzi, Vassiliki, additional, Papadopoulou, Despoina, additional, Lazaris, Vasileios, additional, Apostolou, Chrysoula, additional, Kattamis, Antonis, additional, and Symeonidis, Argiris, additional

Published
2019
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14. Hepatitis C Virus Infection, but Not Hepatic Iron Overload Is the Dominant Risk Factor for the Manifestation of Hepatocellular Carcinoma Among Greek Thalassemic Patients

Author

Kourakli, Alexandra, primary, Diamantidis, Michael D., additional, Skafidas, Myrto-Evangelia, additional, Delicou, Sophia, additional, Pantelidou, Despoina, additional, Fragodimitri, Christina, additional, Vlachaki, Efthymia, additional, Lafioniatis, Stylianos, additional, Petropoulou, Fotini, additional, Eftychiadis, Eftychios, additional, Kapsali, Eleni, additional, Kalpaka, Anastasia, additional, Zissis, Christos, additional, Koutsouka, Frideriki, additional, Vasileiadi, Artemis, additional, Goula, Anastasia, additional, Giasari, Panagiota, additional, Katsatou, Marianna, additional, Lafiatis, Ioannis, additional, Klironomos, Evangelos, additional, Kaiafas, Panagiotis, additional, Kyriacopoulou, Dimitra, additional, Lazaris, Vasileios, additional, Maragkos, Konstantinos, additional, Fotiou, Paraskevi, additional, Chalkia, Panagiota, additional, Schiza, Vasiliki, additional, Kattamis, Antonis, additional, and Symeonidis, Argiris, additional

Published
2018
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15. National registry of hemoglobinopathies in Greece: updated demographics, current trends in affected births, and causes of mortality.

Author

on behalf of the Greek Haemoglobinopathies Study Group, Greek Haemoglobinopathies Study Group, Voskaridou, Ersi, Maragkos, Konstantinos, Petropoulou, Fotini, Eftihiadis, Eftihios, Klironomos, Evangelos, Koutsouka, Freideriki, Nestora, Konstantina, Tzoumari, Ioanna, Papageorgiou, Ourania, Basileiadi, Artemis, Lafiatis, Ioannis, Kattamis, Antonis, Dimitriadou, Efthimia, Kalpaka, Anastasia, Kalkana, Chrysoula, Xanthopoulidis, Georgios, Adamopoulos, Ioannis, and Kaiafas, Panagiotis

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. [ABSTRACT FROM AUTHOR]

Published
2019
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