title: An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: the Euro-mediterranean ITHANET project.
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.
authors: Molecular Genetics Thalassaemia Department, The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus. lederer@cing.ac.cy
authors: Carsten W
authors: CW
authors: Lederer
authors: A Nazli
authors: AN
authors: Basak
authors: Yesim
authors: Y
authors: Aydinok
authors: Soteroula
authors: S
authors: Christou
authors: Amal
authors: A
authors: El-Beshlawy
authors: Androulla
authors: A
authors: Eleftheriou
authors: Slaheddine
authors: S
authors: Fattoum
authors: Alex E
authors: AE
authors: Felice
authors: Eitan
authors: E
authors: Fibach
authors: Renzo
authors: R
authors: Galanello
authors: Roberto
authors: R
authors: Gambari
authors: Lucian
authors: L
authors: Gavrila
authors: Piero C
authors: PC
authors: Giordano
authors: Frank
authors: F
authors: Grosveld
authors: Helen
authors: H
authors: Hassapopoulou
authors: Eva
authors: E
authors: Hladka
authors: Emmanuel
authors: E
authors: Kanavakis
authors: Franco
authors: F
authors: Locatelli
authors: John
authors: J
authors: Old
authors: George P
authors: GP
authors: Patrinos
authors: Giovanni
authors: G
authors: Romeo
authors: Ali
authors: A
authors: Taher
authors: Joanne
authors: J
authors: Traeger-Synodinos
authors: Panayiotis
authors: P
authors: Vassiliou
authors: Ana
authors: A
authors: Villegas
authors: Ersi
authors: E
authors: Voskaridou
authors: Henri
authors: H
authors: Wajcman
authors: Anastasios
authors: A
authors: Zafeiropoulos
authors: Marina
authors: M
authors: Kleanthous
mesh_terms: D005060:Europe; D005843:Geography; D006453:Hemoglobinopathies / Q000628:therapy*; D006801:Humans; D007256:Information Systems; D007391:International Cooperation; D020407:Internet; D019083:Mediterranean Region; D012107:Research Design; D013789:Thalassemia / Q000628:therapy*