@article {117540,
	title = {An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: the Euro-mediterranean ITHANET project.},
	journal = {Hemoglobin},
	volume = {33},
	year = {2009},
	month = {2009},
	pages = {163-76},
	abstract = {<p>Hemoglobin (Hb) disorders are common, potentially lethal monogenic diseases, posing a global health challenge. With worldwide migration and intermixing of carriers, demanding flexible health planning and patient care, hemoglobinopathies may serve as a paradigm for the use of electronic infrastructure tools in the collection of data, the dissemination of knowledge, the harmonization of treatment, and the coordination of research and preventive programs. ITHANET, a network covering thalassemias and other hemoglobinopathies, comprises 26 organizations from 16 countries, including non-European countries of origin for these diseases (Egypt, Israel, Lebanon, Tunisia and Turkey). Using electronic infrastructure tools, ITHANET aims to strengthen cross-border communication and data transfer, cooperative research and treatment of thalassemia, and to improve support and information of those affected by hemoglobinopathies. Moreover, the consortium has established the ITHANET Portal, a novel web-based instrument for the dissemination of information on hemoglobinopathies to researchers, clinicians and patients. The ITHANET Portal is a growing public resource, providing forums for discussion and research coordination, and giving access to courses and databases organized by ITHANET partners. Already a popular repository for diagnostic protocols and news related to hemoglobinopathies, the ITHANET Portal also provides a searchable, extendable database of thalassemia mutations and associated background information. The experience of ITHANET is exemplary for a consortium bringing together disparate organizations from heterogeneous partner countries to face a common health challenge. The ITHANET Portal as a web-based tool born out of this experience amends some of the problems encountered and facilitates education and international exchange of data and expertise for hemoglobinopathies.</p>
},
	keywords = {Europe, Geography, Hemoglobinopathies, Humans, Information Systems, International Cooperation, Internet, Mediterranean Region, Research Design, Thalassemia},
	issn = {1532-432X},
	doi = {10.1080/03630260903089177},
	author = {Lederer, Carsten W and Basak, A Nazli and Yesim Aydinok and Christou, Soteroula and Amal El-Beshlawy and Eleftheriou, Androulla and Fattoum, Slaheddine and Felice, Alex E and Fibach, Eitan and Galanello, Renzo and Gambari, Roberto and Gavrila, Lucian and Giordano, Piero C and Grosveld, Frank and Hassapopoulou, Helen and Hladka, Eva and Kanavakis, Emmanuel and Locatelli, Franco and Old, John and Patrinos, George P and Romeo, Giovanni and Ali Taher and Traeger-Synodinos, Joanne and Vassiliou, Panayiotis and Villegas, Ana and Voskaridou, Ersi and Wajcman, Henri and Zafeiropoulos, Anastasios and Kleanthous, Marina}
}
