An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: the Euro-mediterranean ITHANET project.
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.
Lederer
Carsten W
CW
Molecular Genetics Thalassaemia Department, The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus. lederer@cing.ac.cy
Basak
A Nazli
AN
Aydinok
Yesim
Y
Christou
Soteroula
S
El-Beshlawy
Amal
A
Eleftheriou
Androulla
A
Fattoum
Slaheddine
S
Felice
Alex E
AE
Fibach
Eitan
E
Galanello
Renzo
R
Gambari
Roberto
R
Gavrila
Lucian
L
Giordano
Piero C
PC
Grosveld
Frank
F
Hassapopoulou
Helen
H
Hladka
Eva
E
Kanavakis
Emmanuel
E
Locatelli
Franco
F
Old
John
J
Patrinos
George P
GP
Romeo
Giovanni
G
Taher
Ali
A
Traeger-Synodinos
Joanne
J
Vassiliou
Panayiotis
P
Villegas
Ana
A
Voskaridou
Ersi
E
Wajcman
Henri
H
Zafeiropoulos
Anastasios
A
Kleanthous
Marina
M
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*