Epidemiology of haemoglobin disorders in Europe: an overview

References

• Weatherall D. J., Clegg J. B. The thalassaemia syndromes. Oxford, Blackwell Science, 4th edn
   Google Scholar
• The Haemoglobinopathies in Europe, WHO Regional Office for Europe, unpublished document IPC/MCH 110. 1988
   Google Scholar
• Modell B., . EC concerted action on developing patient registers as a tool for improving service delivery for haemoglobin disorders. Health Services Research, G. N Fracchia, M Theophilatou, et al. IOS Amsterdam Press, Amsterdam 1993
   Google Scholar
• UK National Screening Programme. Available at: http://www.nsc.nhs.uk
   Google Scholar
• UK Sickle Cell and Thalassaemia Screening Programme. Available at: http://www‐phm.umds.ac.uk/haemscreening/
   Google Scholar
• Boletini E. 1991; 9–11, and personal communications, The haemoglobinopathies in Albania. Proceedings of the meeting of the Mediterranean Blood Club, Milan, Italy
   Google Scholar
• Angastiniotis M. A., Hadjiminas M. G. Prevention of thalassaemia in Cyprus. Lancet 1981; 1: 369–70
   PubMed Web of Science ®Google Scholar
• Efremov G. D., Juricic D., Stojanovski N. Hemoglobinopathies in Yugoslavia. Hemoglobin 1982; 6: 643–51
   PubMed Web of Science ®Google Scholar
• Malamos B., Fessas Ph., Stamatoyannopoulos G. Types of thalassaemia trait carriers as revealed by their incidence in Greece. Br J Haematol 1962; 8: 5
   PubMed Web of Science ®Google Scholar
• Personal communications: Dr Zurlo, Dr Angelo Rossi‐Mori, and many other colleagues
   Google Scholar
• Grech J., Felice A. Personal communications and Scerri CA, Abela W, Galdies R, Pizzuto M, Grech JL, Felice AE. The beta+IVS, I‐NT no. 6 (T–>C) thalassaemia in heterozygotes with an associated Hb Valletta or Hb S heterozygosity in homozygotes from Malta. Br J Haematol. 1993; 83: 669–71
   Google Scholar
• Martins M. C., Olim G., Melo J., Magalhaes H. A., Rodrigues M. O. Hereditary anaemias in Portugal: epidemiology, public health significance and control. J Med Genet 1993; 30: 235–9
   PubMed Web of Science ®Google Scholar
• Amselem S., Nunes V., Vidaud M., Estivill X., Wong C., d'Auriol L., et al. Determination of the spectrum of beta‐thalassemia genes in Spain by use of dot‐blot analysis of amplified beta‐globin DNA. Am J Hum Genet 1988; 43: 95–100
   PubMed Web of Science ®Google Scholar
• Akar N., Personal communication 1999 (1997 data)
   Google Scholar
• Modell B, Darlison M. Global epidemiology of haemoglobin disorders, and derived service indicators. Submitted for publication 2006. Updated information for the UK is available at: http://www.pegasus.nhs.uk
   Google Scholar
• Health Education Authority. Sickle Cell and Thalassaemia: achieving health gain. Guidance for commissioners and providers. London, Health Education Authority 1998
   Google Scholar
• Hickman M., Modell B., Greengross P., Chapman C., Layton M., Gill M., Davies S. Mapping the prevalence of beta thalassaemia and sickle cell haemoglobin in England: recommended rates for local service planning. Br J Haematol 1999; 104: 860–7
   PubMed Web of Science ®Google Scholar
• Wonke B., Modell M., Marlow T., Khan M., Modell B. Microcytosis, iron deficiency and thalassaemia in a multi‐ethnic community: a pilot study. Scand J Clin Lab Invest 2007; 67: 87–95
   PubMed Web of Science ®Google Scholar
• Modell B., Darr A. Genetic counselling and customary consanguineous marriage. Nature Rev Genet 2002; 3: 225–9
   PubMed Web of Science ®Google Scholar
• United Nations Demographic Yearbook. 2003. United Nations, New York. Available at: http://unstats.un.org/unsd/demographic/products/dyb/dyb2.htm
   Google Scholar
• United Nations Demographic Yearbook. Historical Supplement. United Nations, New York; 1997. Available at: http://unstats.un.org/unsd/demographic/products/dyb/dybhist.htm
   Google Scholar
• UK national statistics online. Available at: http://www.statistics.gov.uk/
   Google Scholar
• Denmark national statistics. Available at: http://www.dst.dk/
   Google Scholar
• Norway national statistics. Available at: http://www.ssb.no/
   Google Scholar
• Organisation for Economic Co‐operation and Development. Statistics. Available at: www.oecd.org
   Google Scholar
• Bodmer W. F., Cavalli‐Sforza L. L. Genetics, evolution, and man. W. H. Freeman, San Francisco 1976
   Google Scholar
• Bittles AH. Consanguineous marriage: current global incidence and its relevance to demographic research. Population Studies Center, University of Michigan. 1990. Research report no. 90–186. Updated data available at www.consang.org
   Google Scholar
• Darr A., Modell B. The frequency of consanguineous marriage among British Pakistanis. J Med Genet 1988; 25: 186–90
   PubMed Web of Science ®Google Scholar
• Taven C. Les immigres en France: une situation qui evolue. INSEE Premiere 1042. Sept 2005. Available at: www.insee.fr
   Google Scholar
• Imamura T., Sugihara J., Matsuo T., Maruyama T., Ohta Y., Sumida I., et al. Frequency and distribution of structural variants of hemoglobin and thalassemic states in Western Japan. Hemoglobin 1980; 4: 409–15
   PubMed Web of Science ®Google Scholar
• Iuchi I. Abnormal hemoglobin in Japan: biochemical and epidemiologic characters of abnormal hemoglobin in Japan. Acta Haematol Jpn 1968; 31: 842–51
   PubMedGoogle Scholar
• Cook A. I., Lehmann H. Beta thalassaemia and some rare haemoglobin variants in the highlands of Scotland. Scott Med J 1973; 18: 14–20
   PubMed Web of Science ®Google Scholar
• Knox‐MacAulay H. H. M., Weatherall D. J., Clegg J. B., Pembrey M. E. Thalassaemia in the British. Br Med J 1973; 3: 150
   PubMed Web of Science ®Google Scholar
• Vetter B., Schwarz C., Kohne E., Kulozik A. E. Beta‐thalassaemia in the immigrant and non‐immigrant German populations. Br J Haematol 1997; 266–72
   PubMed Web of Science ®Google Scholar
• Giordano P. C., Harteveld C. L., Heister A. J., Batelaan D., van Delft P., Plug R., et al. The molecular spectrum of beta‐thalassemia and abnormal hemoglobins in the allochthonous and autochthonous Dutch population. Commun Genet 1998; 1: 243–51
   PubMedGoogle Scholar
• Irenge L. M., Heuterspreute M., Philippe M., Derclaye I., Robert A., Gala J. L. Beta‐thalassaemia in indigenous Belgians: an update. Acta Clin Belg 1997; 52: 171–5
   PubMed Web of Science ®Google Scholar
• Modell B., Khan M., Darlison M., King A., Layton M., Old J., et al. Use of a national diagnosis register for surveillance of an inherited disorder: the example of beta thalassaemia in the United Kingdom. Bull WHO 2001; 79: 1006–13
   PubMed Web of Science ®Google Scholar
• Modell B., Darlison M., Epidemiology of haemoglobin disorders in England and Wales. In preparation
   Google Scholar
• Karnon J., Zeuner D., Brown J., Ades A. E., Wonke B., Modell B. Lifetime treatment costs of beta‐thalassaemia major. Clin Lab Haematol 1999; 21: 377–85
   PubMedGoogle Scholar
• Karnon J., Zeuner D., Ades A. E., Efimba W., Brown J., Yardumian A. The effects of neonatal screening for sickle cell disorders on lifetime treatment costs and early deaths avoided: a modelling approach. J Public Health Med 2000; 22: 500–11
   PubMedGoogle Scholar
• Zeuner D, Ades AE, Karnon J, Brown J, Dezateux C, Anionwu EN. 1999. Antenatal and neonatal haemoglobinopathy screening in the UK: review and economic analysis. NHS R&D HTA Programme. Available at: www.hta.nhsweb.nhs.uk
   Google Scholar
• Cario H., Stahnke K., Sander S., Kohne E. Epidemiological situation and treatment of patients with thalassemia major in Germany: results of the German multicenter beta‐thalassemia study. Ann Hematol 2000; 79: 7–12
   PubMed Web of Science ®Google Scholar
• Higgs D. R., Vickers M. A., Wilkie A. O. M., Pretorius I. M., Jarman A. P., Weatherall D. J. A review of the molecular genetics of the human alpha globin gene cluster. Blood 1989; 73: 1081–104
   PubMed Web of Science ®Google Scholar
• Loukopoulos D. Current status of thalassaemia and the sickle cell syndromes in Greece. Semin Hematol 1996; 33: 76–86
   PubMed Web of Science ®Google Scholar
• Cao A., Furbetta M., Galanello R., Melis M. A., Angius A., Ximenes A., et al. Prevention of homozygous β‐thalassaemia by carrier screening and prenatal diagnosis in Sardinia. Am J Human Genet 1981; 33: 592–605
   PubMed Web of Science ®Google Scholar
• Maggio A., Caronia F., Orlandi F. Prenatal diagnosis of haemoglobinopathies in Sicily. Lancet 1992; 339: 1361–2
   PubMed Web of Science ®Google Scholar
• Angastiniotis M. A., Hadjiminas M. G. Prevention of thalassaemia in Cyprus. Lancet 1981; 1: 369–70
   PubMed Web of Science ®Google Scholar
• Canatan D., Kose M. R., Ustundag M., Haznedaroglu D., Ozbas S. Hemoglobinopathy control program in Turkey. Community Genet 2006; 9: 124–6
   PubMedGoogle Scholar
• Cario H., Stahnke K., Sander S., Kohne E. Epidemiological situation and treatment of patients with thalassemia major in Germany: results of the German multicenter beta‐thalassemia study. Ann Hematol 2000; 79: 7–12
   PubMed Web of Science ®Google Scholar
• Dickerhoff R., von Rucker A., Kohne E. Sichelzellerkrakungen in Deutchschland. Verlufsbeobachtungen uber zehn jahre. Deutsches Artzeblatt 1998; 95: 26. A‐1675‐8
   Google Scholar
• Gulbis B., Ferster A., Cotton F., Lebouchard M. P., Cochaux P., Vertongen F. Neonatal haemoglobinopathy screening: review of a 10‐year programme in Brussels. J Med Screen, In press
   Web of Science ®Google Scholar
• Giordano P. C., Plancke A., Van Meir C. A., Janssen C. A. H., Kok P. J. M. J., Van Rooijen‐Nijdam I. H., et al. Carrier diagnostics and prevention of hemoglobinopathies in early pregnancy in The Netherlands: a pilot study. Prenatal Diagnosis, In press
   Web of Science ®Google Scholar
• Standards for the clinical care of children and adults with thalassaemia in the UK. 2005, The UK Thalassaemia Society
   Google Scholar
• Professional education for genetic assessment and screening (PEGASUS). Available at: www.pegasus.nhs.uk/
   Google Scholar
• Accessible publishing of genetic information (APoGI). Available at: www.chime.ucl.ac.uk/
   Google Scholar
• WHO. 2004, The molecular genetic epidemiology of cystic fibrosis. Report of a joint meeting of WHO/ECFTN/ICF/(M)A/ECFS. Genoa, Italy, 19 June 2002. WHO/HGN/CF/WG/04.02
   Google Scholar