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

CW Lederer, AN Basak, Y Aydinok, S Christou, A El-Beshlawy, A Eleftheriou, S Fattoum, AE Felice, E Fibach, R Galanello, R Gambari, L Gavrila, PC Giordano, Frank Grosveld, H Hassapopoulou, E Hladka, E Kanavakis, F (Franco) Locatelli, J Old, George PatrinosG Romeo, A Taher, J Traeger-Synodinos, P Vassiliou, A Villegas, E Voskaridou, H Wajcman, A Zafeiropoulos, M Kleanthous

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Abstract

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.
Original languageUndefined/Unknown
Pages (from-to)163-176
Number of pages14
JournalHemoglobin
Volume33
Issue number3-4
DOIs
Publication statusPublished - 2009

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