An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: The Euro-Mediterranean ITHANET project

Carsten W. Lederer, A. Nazli Basak, Yesim Aydinok, Soteroula Christou, Amal El-Beshlawy, Androulla Eleftheriou, Slaheddine Fattoum, Alex E. Felice, Eitan Fibach, Renzo Galanello, Roberto Gambari, Lucian Gavrila, Piero C. Giordano, Frank Grosveld, Helen Hassapopoulou, Eva Hladka, Emmanuel Kanavakis, Franco Locatelli, John Old, George P. PatrinosGiovanni Romeo, Ali Taher, Joanne Traeger-Synodinos, Panayiotis Vassiliou, Ana Villegas, Ersi Voskaridou, Henri Wajcman, Anastasios Zafeiropoulos, Marina Kleanthous

Research output: Contribution to journalArticlepeer-review

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 languageEnglish
Pages (from-to)163-176
Number of pages14
JournalHemoglobin
Volume33
Issue number3-4
DOIs
Publication statusPublished - Jun 2009

Keywords

  • Community networks
  • Database
  • Hemoglobinopathies
  • International cooperation
  • Thalassemia

ASJC Scopus subject areas

  • Hematology
  • Genetics(clinical)
  • Clinical Biochemistry
  • Biochemistry, medical

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