An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: The Euro-Mediterranean ITHANET project
Hemoglobin: international journal for hemoglobin research , Volume 33 - Issue 3-4 p. 163- 176
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.
|Community networks, Database, Hemoglobinopathies, International cooperation, Thalassemia|
|Hemoglobin: international journal for hemoglobin research|
|Organisation||Erasmus MC: University Medical Center Rotterdam|
Lederer, C.W, Basak, A.N, Aydinok, Y, Christou, S, El-Beshlawy, A, Eleftheriou, A, … Kleanthous, M. (2009). An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: The Euro-Mediterranean ITHANET project. Hemoglobin: international journal for hemoglobin research, 33(3-4), 163–176. doi:10.1080/03630260903089177