An Electronic Infrastructure for Research and Treatment of the Thalassemias and Other Hemoglobinopathies: The Euro-Mediterranean Ithanet Project

REFERENCES

• Spallek H, Butler BS, Schleyer TK, et al. Supporting emerging disciplines with e-communities: Needs and benefits. J Med Internet Res. 2008; 10(2)e19
   PubMed Web of Science ®Google Scholar
• Williams F, Boren SA. The role of the electronic medical record (EMR) in care delivery development in developing countries: A systematic review. Inform Prim Care. 2008; 16(2)139–145
   PubMedGoogle Scholar
• Peterson K. Practice-based primary care research-translating research into practice through advanced technology. Fam Pract. 2006; 23(2)149–150
   PubMedGoogle Scholar
• Scales DC, Adhikari NK. Lost in (knowledge) translation: “All breakthrough, no follow through”?. Crit Care Med 2008; 36(5)1654–1655
   PubMedGoogle Scholar
• Roberts I, de Montalembert M. Sickle cell disease as a paradigm of immigration hematology: New challenges for hematologists in Europe. Haematologica. 2007; 92(7)865–871
   PubMed Web of Science ®Google Scholar
• Higgs DR, Vernimmen D, Wood B. Long-range regulation of α-globin gene expression. Adv Genet. 2008; 61: 143–173
   PubMed Web of Science ®Google Scholar
• Palstra RJ, de Laat W, Grosveld F. β-Globin gegulation and long-range interactions. Adv Genet. 2008; 61: 107–112
   PubMedGoogle Scholar
• Thein SL. Genetic modifiers of β-Thalassaemia. Haematologica. 2005; 90(5)649–660
   PubMed Web of Science ®Google Scholar
• Pasvol G, Weatherall DJ, Wilson RJ. Cellular mechanism for the protective effect of Haemoglobin S against P. falciparum malaria. Nature. 1978; 274(5672)701–703
   PubMedGoogle Scholar
• Modiano D, Luoni G, Sirima BS, et al. Haemoglobin C protects against clinical Plasmodium falciparum malaria. Nature. 2001; 414(6861)305–308
   PubMedGoogle Scholar
• Mockenhaupt FP, Ehrhardt S, Gellert S, et al. α+-Thalassemia protects African children from severe malaria. Blood. 2004; 104(7)2003–2006
   PubMed Web of Science ®Google Scholar
• Chotivanich K, Udomsangpetch R, Pattanapanyasat K, et al. Hemoglobin E: A balanced polymorphism protective against high parasitemias and thus severe P falciparum malaria. Blood. 2002; 100(4)1172–1176
   PubMed Web of Science ®Google Scholar
• van Baal S, Kaimakis P, Phommarinh M, et al. FINDbase: A relational database recording frequencies of genetic defects leading to inherited disorders worldwide. Nucleic Acids Res. 2007; 35(Database issue)D690–D695
   Web of Science ®Google Scholar
• Metcalfe SA, Barlow-Stewart K, Campbell J, Emery J. Genetics and blood—haemoglobinopathies and clotting disorders. Aust Fam Phys. 2007; 36(10)812–819
   PubMedGoogle Scholar
• Vichinsky E. Hemoglobin E syndromes. Hematol Am Soc Hematol Educ Program. 2007; 2007: 79–83
   Google Scholar
• Flint J, Harding RM, Boyce AJ, Clegg JB. The population genetics of the haemoglobinopathies. Baillieres Clin Haematol. 1998; 11(1)1–51
   PubMed Web of Science ®Google Scholar
• Weatherall DJ, Clegg JB. Inherited haemoglobin disorders: An increasing global health problem. Bull World Health Organ. 2001; 79(8)704–712
   PubMed Web of Science ®Google Scholar
• Modell B, Darlison M, Birgens H, et al. Epidemiology of haemoglobin disorders in Europe: An overview. Scand J Clin Lab Invest. 2007; 67(1)39–69
   PubMed Web of Science ®Google Scholar
• Dickerhoff R, Kulozik AE, Kohne E. [Monitoring pregnant patients from risk countries with sickle cell disease and thalassemia. Clinical aspects, screening and prenatal diagnosis]. Geburtshilfe Frauenheilkd. 1993; 53(4)215–221
   PubMedGoogle Scholar
• Shafer FE, Lorey F, Cunningham GC, Klumpp C, Vichinsky E, Lubin B. Newborn screening for sickle cell disease: 4 years of experience from California's newborn screening program. J Pediatr Hematol Oncol. 1996; 18(1)36–41
   PubMed Web of Science ®Google Scholar
• Lau YL, Chan LC, Chan YY, et al. Prevalence and genotypes of α- and β‐thalassemia carriers in Hong Kong—implications for population screening. N Engl J Med. 1997; 336(18)1298–1301
   PubMed Web of Science ®Google Scholar
• Modell B, Harris R, Lane B, et al. Informed choice in genetic screening for thalassaemia during pregnancy: Audit from a national confidential inquiry. BMJ. 2000; 320(7231)337–341
   PubMed Web of Science ®Google Scholar
• Harteveld CL, van Helden WC, Boxma GL, et al. Hb Zoetermeer: A new mutation on the α2 gene inducing an Ala→Ser substitution at codon 21 is possibly associated with a mild thalassemic phenotype. Hemoglobin. 2007; 31(3)325–332
   PubMed Web of Science ®Google Scholar
• Vichinsky EP. Changing patterns of thalassemia worldwide. Ann NY Acad Sci. 2005; 1054: 18–24
   PubMed Web of Science ®Google Scholar
• Chadwick R, ten Have H, Husted J, et al. Genetic screening and ethics: European perspectives. J Med Philos. 1998; 23(3)255–273
   PubMed Web of Science ®Google Scholar
• Locock L, Kai J. Parents’ experiences of universal screening for haemoglobin disorders: Implications for practice in a new genetics era. Br J Gen Pract. 2008; 58(548)161–168
   PubMed Web of Science ®Google Scholar
• Aluoch JR, De Geus A, Goudsmit R. Clinical and laboratory features of sickle cell disease in the Netherlands. Trop Geogr Med. 1988; 40(1)7–12
   PubMedGoogle Scholar
• Lorey FW, Arnopp J, Cunningham GC. Distribution of hemoglobinopathy variants by ethnicity in a multiethnic state. Genet Epidemiol. 1996; 13(5)501–512
   PubMed Web of Science ®Google Scholar
• Hickman M, Modell B, Greengross P, Chapman C, Layton M, Falconer S, et al. Mapping the prevalence of sickle cell and β thalassaemia in England: Estimating and validating ethnic-specific rates. Br J Haematol. 1999; 104(4)860–867
   PubMed Web of Science ®Google Scholar
• Davies SC, Cronin E, Gill M, Greengross P, Hickman M, Normand C. Screening for sickle cell disease and thalassaemia: A systematic review with supplementary research. Health Technol Assess. 2000; 4(3)i–v; 1–99
   PubMedGoogle Scholar
• Angastiniotis MA, Hadjiminas MG. Prevention of thalassaemia in Cyprus. Lancet. 1981; 1(8216)369–371
   PubMed Web of Science ®Google Scholar
• Telfer P, Coen PG, Christou S, et al. Survival of medically treated thalassemia patients in Cyprus. Trends and risk factors over the period 1980–2004. Haematologica. 2006; 91(9)1187–1192
   PubMed Web of Science ®Google Scholar
• Zohoun IS, Merault G, Reinette P, Rosa J. [Health policies and sickle cell disease]. Rev Prat. 1992; 42(15)1873–1877
   PubMedGoogle Scholar
• Ko TM, Xu X. Molecular study and prenatal diagnosis of α- and β-thalassemias in Chinese. J Formos Med Assoc. 1998; 97(1)5–15
   PubMed Web of Science ®Google Scholar
• Diagne I, Diagne-Gueye ND, Signate-Sy H, et al. [Management of children with sickle cell disease in Africa: Experience in a cohort of children at the Royal Albert Hospital in Dakar]. Med Trop (Mars). 2003; 63(4–5)513–520
   PubMedGoogle Scholar
• Masmas TN, Garly ML, Lisse IM, Rodriques A, Petersen PT, Birgens H. Inherited hemoglobin disorders in Guinea-Bissau, West Africa: A population study. Hemoglobin. 2006; 30(3)355–364
   PubMed Web of Science ®Google Scholar
• De Montalembert M, Tshilolo L. [Is therapeutic progress in the management of sickle cell disease applicable in sub-Saharan Africa?]. Med Trop (Mars). 2007; 67(6)612–616
   PubMedGoogle Scholar
• Borgna-Pignatti C. Thalassemia. A few new tiles in a large mosaic. Haematologica. 2006; 91(9)1159–1161
   PubMedGoogle Scholar
• Eleftheriou A. The role of the Thalassaemia International Federation in health professionals’ education. Pediatr Endocrinol Rev. 2004; 2(Suppl. 2)242–244
   PubMedGoogle Scholar
• Weatherall D, Hofman K, Rodgers G, Ruffin J, Hrynkow S. A case for developing North-South partnerships for research in sickle cell disease. Blood. 2005; 105(3)921–923
   PubMedGoogle Scholar
• European Genetics Foundation. (2009). http://www.eurogene.org/portale/index.php. Archived at: http://www.webcitation.org/5eBoKb8TS.
   Google Scholar
• Holub P, Hladka E, Prochazka M, Liska M. Secure and pervasive collaborative platform for medical applications. Stud Health Technol Inform. 2007; 126: 229–238
   PubMedGoogle Scholar
• Telethra, Inc. (2009). OpenVPN. http://www.openvpn.net/. Archived at: http://www.webcitation.org/5eBnwUInS
   Google Scholar
• The EUMEDCONNECT Network. (2009). http://www.eumedconnect.net. Archived at: http://www.webcitation.org/5eBnyqPIt
   Google Scholar
• The Ithanet Consortium. (2009). ITHANET. http://project.ithanet.eu. Archived at: http://www.webcitation.org/5eBns77ZT.
   Google Scholar
• The ITHANET Consortium. (2009). The ITHANET Portal. http://www.ithanet.eu. Archived at: http://www.webcitation.org/5eBnlBi5T
   Google Scholar
• The Access Grid Community. (2009). http://www.accessgrid.org. Archived at: http://www.webcitation.org/5eBntqNm4
   Google Scholar
• Thalassaemia International Federation. (2009). http://www.thalassaemia.org.cy. Archived at: http://www.webcitation.org/5eBnXay4B
   Google Scholar
• Kalokairinou EM. The experience of β-thalassaemia and its prevention in Cyprus. Med Law. 2007; 26(2)291–307
   PubMedGoogle Scholar
• Hoedemaekers R, ten Have H. Geneticization: the Cyprus paradigm. J Med Philos. 1998; 23(3)274–287
   PubMed Web of Science ®Google Scholar