Τίτλος:
An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: The Euro-Mediterranean ITHANET project
Γλώσσες Τεκμηρίου:
Αγγλικά
Περίληψη:
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. Copyright © Informa Healthcare USA, Inc.
Συγγραφείς:
Lederer, C.W.
Basak, A.N.
Aydinok, Y.
Christou, S.
El-Beshlawy, A.
Eleftheriou, A.
Fattoum, S.
Felice, A.E.
Fibach, E.
Galanello, R.
Gambari, R.
Gavrila, L.
Giordano, P.C.
Grosveld, F.
Hassapopoulou, H.
Hladka, E.
Kanavakis, E.
Locatelli, F.
Old, J.
Patrinos, G.P.
Romeo, G.
Taher, A.
Traeger-Synodinos, J.
Vassiliou, P.
Villegas, A.
Voskaridou, E.
Wajcman, H.
Zafeiropoulos, A.
Kleanthous, M.
Περιοδικό:
Hemoglobin: Interrnational Journal for Hemoglobin Research
Λέξεις-κλειδιά:
hemoglobin, article; clinical protocol; community; computer network; computer program; data base; Egypt; Europe; geographic distribution; health care planning; hemoglobinopathy; human; international cooperation; Internet; Israel; Lebanon; medical ethics; medical information system; medical research; prenatal diagnosis; problem solving; resource management; screening test; thalassemia; Tunisia; Turkey (republic); videoconferencing, Europe; Geography; Hemoglobinopathies; Humans; Information Systems; International Cooperation; Internet; Mediterranean Region; Research; Thalassemia
DOI:
10.1080/03630260903089177
