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Hemoglobinopathies, migrants, refugees, Turkey, Spain, Italy, Equality Plus Project
Sickle cell disease (SCD) and thalassemias are the most common monogenic diseases in the world. The number of migrants and refugees in Europe and Turkey, in the past decade, has increased dramatically due to war, violence or prosecutions in their homeland. Prevention and management of haemoglobin disorders is well established and managed in countries where these conditions were traditionally endemic or in countries that have a longstanding tradition of receiving migrants. Therefore, preventive and diagnostic programmes regarding hemoglobinopathies in immigrant populations have been implemented. The purpose of this paper it to report a summary of the experience gained in Italy, Spain and Turkey in migrants, asylum seekers and refugees.
2. Theodorsson E, Birgens H, Hagve TA. Haemoglobinopathies and glucose-6-phosphate dehydrogenase deficiency in a Scandinavian perspective. Scand J Clin Lab Invest. 2007;67:3-10
3. Jeng MR, Vichinsky E. Hematologic problems in immigrants from Southeast Asia. Hematol Oncol Clin North Am. 2004;18:1405-22.
4. Vichinsky EP. Changing patterns of thalassemia worldwide. Ann N Y Acad Sci. 2005;1054:18-24.
5. Hoppe CC. Prenatal and newborn screening for hemoglobinopathies.Int J Lab Hematol. Int Jnl Lab Hem. 2013; 35:297–305.
6. Colah R, Gorakshakar A, Nadkarni A. Global burden, distribution and prevention of β-thalassemias and hemoglobin E disorders. Expert Rev Hematol. 2010;3:103-17.
7. Angastiniotis M, Petrou M, Loukopoulos D, et al. The Prevention of Thalassemia Revisited: A Historical and Ethical Perspective by the Thalassemia International Federation. Hemoglobin. 2021;45:5-12.
8. Pecker LH, Naik RP. The current state of sickle cell trait: implications for reproductive and genetic counseling. Blood. 2018;132:2331-8.
9. Caritas Italiana. COMMON HOME MIGRATION AND DEVELOPMENT IN ITALY. 2019.pp.1-30.
10. Bittles AH, Black ML. Consanguinity, human evolution and complex diseases. Proc Nat Acad Sci. 2010;107:1779–86.
11. Silvestroni E, Bianco I. Screening for microcytemia in Italy: analysis of data collected in the past 30 years. Am J Hum Genet. 1975;27:198-212.
12. Schilirò G. Sicily: the world reservoir for thalassemias and haemoglobinopathies. Nature.1978;276:761.
13. Russo G, De Franceschi L, Colombatti R, et al. Current challenges in the management of patients with sickle cell disease – A report of the Italian experience. Orphanet J Rare Dis.2019; 14:120. doi.org/10.1186/ s13023-019-1099-0.
14. Russo-Mancuso G, La Spina M, Schilirò G. The changing profile of sickle cell disease in Italy. Eur J Epidemiol. 2003;18:923–4.
15. Lodi M, Bigi E, Palazzi G, et al. Universal Screening Program in Pregnant Women and Newborns at-Risk for Sickle Cell Disease: First Report from Northern Italy. Hemoglobin. 2017;41:230–3.
16. De Franceschi L, Lux C, Piel FB, et al. Access to emergency departments for acute events and identification of sickle cell disease in refugees. Blood. 2019;133:2100-3.
17. De Franceschi L. Routine Sickle Cell Disease Screening Among Migrants May Help Fast-Track Treatment, Save Lives, and Reduce Health Care Costs.www.hematology.org.9th may,2019.
18. Inusa BPD, Colombatti R. European migration crises: The role of national hemoglobinopathy registries in improving patient access to care. Pediatr Blood Cancer. 2017;64(7):e26515.
19. Hulihan MM, Feuchtbaum L, Jordan L, Kirby RS, Snyder A, Young W, et al. State-based surveillance for selected hemoglobinopathies. Genet Med. 2015; 17:125–30.
20. Dulin Iñiıgueza E, Cantalejo López MA, Cela de Julián ME, Garci G. Early detection of sickle cell anemia and other hemoglobinopathies in neonates in the autonomous community of Madrid. A pilot study. An Pediatr (Barc). 2003;58:146–55.
21. Cela de Julian E, Dulin Iñiguez E, Guerrero Soler M, et al. Evaluation of systematic neonatal screening for sickle cell diseases in Madrid three years after its introduction An Pediatr (Barc). 2007;66:382–86.
22. Baiget M, del R´ıo E, Doménech M, et al. Escrutinio de hemoglobinopatías en sangre de cordon umbilical. Biolog´ıa Cl´ın Hematol. 1981;3:251–6.
23. Angastiniotis M, Modell B, Englezos P, et al. Prevention and control of hemoglobinopathies. Bull World Health Org 1995;73:375–86.
24. Study Group for Hemoglobinopathies and Thalassemias. Thalassemia syndromes in Spain. Preliminary epidemiologic data. Sangre (Barc). 1986;122:60913.
25. Baiget M. Hemoglobinas estructurales en España. Sangre (Barc). 1985;30:899–904.
26. Oliva Berini E, Cladera Serra A, Torrent Quetglas M. Campaign for the detection of minor beta-thalassemia and prevention of major beta-thalassemia in the isle of Menorca.10-year experience. Med Clin (Barc) 1998;110:361–4.
27. Mañú-Pereira M, Maya A, Cararach V, Sabria J, Boixadera J, Quintò L, Vives Corrons JL. Neonatal screening of hemoglobinopathies and glucose-6-phosphate dehydrogenase in Catalonia. The pilot study in an anonymous, not related population. Med Clin (Barc). 2006;126:281–285.
28. Mañú Pereira M, Cabot A, Mart´ınez Gonz´alez A, et al. Neonatal screening of haemoglobinopathies and G6PD deficiency in Catalonia (Spain). Molecular study of sickle cell disease associated with alpha thalassaemia and G6PD deficiency. Med Clin (Barc). 2007;129:161–4.
29. Las Heras Manso G, Juncà Piera J, Feliu Frasnedo E, Rovira Fernandez JM, Gil Garcia M. Haemoglobinopathies and glucose-6-phosphate dehydrogenase deficiency in the sub-Saharan immigrant population of the Center and South Maresme region, Catalonia, Spain. Med Clin (Barc). 2008;131:5–9.
30. Daniel Y, Elion J, Allaf B, et al. Newborn Screening for Sickle Cell Disease in Europe. Int. J. Neonatal Screen. 2019, 5: 15 .
31.Orphanet. Prevalence of rare diseases. Orphanet report series 2018 http://www.orpha.net/orphacom/cahiers/ docs/GB/Prevalence of rare diseases by alphabetical list.pdf.
32. Bardón Cancho EJ, García-Morín M, Beléndez C, et al. Update of the Spanish registry of haemoglobinopathies in children and adults. Med Clin.2030;155: 95-103.
33. Cela E, Bellón JM, de la Cruz M et al National registry of hemoglobinopathies in Spain (REPHem). Pediatr Blood Cancer. 2017 64:7. doi: 10.1002/pbc.26322.
34. Ekmekci PE. Syrian Refugees, Health and Migration Legislation in Turkey. J Immigr Minor Health. 2017;19:1434–41.
35.The Report of Health Services on Temporary Protection of General Directory of Public Health of MOH of Turkey in 2019. www.goc.gov.tr/gecici-koruma5638.
36. Report from the Commission to the European Parliament and the Council. EU-Turkey Joint Action Plan-Third implementation report. 2014. Cited on 11 March 2016. http://ec.europa.eu/dgs/home-affairs/what-we-do/policies/european-agenda-migration/proposal-implementation-package/docs/implementation_report_2016 0304_eu-turkey_joint_action_plan_en.pdf.
37.UNHCR - The UN Refugee Agency. www.unhcr.org.
38. Ombudsman Institution of The Republic of Turkey. Special report on Syrians in Turkey. https://www.ombud sman.gov.tr/syria ns/speci al_report.pdf. Published 20018. Accessed January 2019.
39. Yazal Erdem A, Demir Yenigürbüz F, Pekpak E, et al. Refugee children with beta-thalassemia in Turkey: Overview of demographic, socioeconomic, and medical characteristics. Pediatr Blood Cancer. 2019;66:e27636.
40. Republic of Turkey Ministry of Health, General Directorate of Public Health January The report of activity of 2019 year. January -2020. www.goc.gov.tr.
41. Aksoy M, Lekin EW, Maurant AE, Lehmann H. Blood groups,hemoglobins, and thalassemia in Southern Turkey and Eti Turks.Br Med J. 1958;2:937–9.
42. Cavdar AO, Arcasoy A. The incidence of β -thalassemia andabnormal hemoglobins in Turkey. Acta Hematol. 1971;45:313–8.
43. Altay Ç. Abnormal hemoglobins in Turkey. Turk J Hematol 2002;19:63-74.
44.Canatan D, Kose MR, Ustundag˘ M, et al. Hemoglobinopathy control program in Turkey. Community Genet. 2006;9:124–126.
45.Ministry of Health of Turkey. Hemoglobinopathy Control Program. Canatan D, Ed. Tu¨rkiye Klinikleri J Hem Onc Special Topics. 2010;3:5–8.
46.www.Republic of Turkey Ministry of Health, General Directorate of Public Health, Child and Adolescent Health Department.
47. Lobitz S, Telfer P, Cela E, et.al. Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference. Br J Haematol. 2018;183:648-60.
48. Telfer P, Coen PG, Christou S, et al. Survival of medically treated thalassaemia major patients in Cyprus. Trends and risk factors over the period 1980–2004. Haematologica.2006; 91:1187–92.
49. Angastiniotis M, Vives Corrons JL, Soteriades ES, Eleftheriou A. The impact of migrations on the health services for rare diseases in Europe: The example of haemoglobin disorders. Sci World J. 2013; 2013: 727905.