An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: the Euro-mediterranean ITHANET project.
Identifieur interne : 000086 ( Main/Exploration ); précédent : 000085; suivant : 000087An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: the Euro-mediterranean ITHANET project.
Auteurs : Carsten W. Lederer [Chypre (pays)] ; 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. Patrinos ; Giovanni Romeo ; Ali Taher ; Joanne Traeger-Synodinos ; Panayiotis Vassiliou ; Ana Villegas ; Ersi Voskaridou ; Henri Wajcman ; Anastasios Zafeiropoulos ; Marina KleanthousSource :
- Hemoglobin [ 1532-432X ] ; 2009.
Descripteurs français
- KwdFr :
- MESH :
English descriptors
- KwdEn :
- MESH :
- geographic : Europe, Mediterranean Region.
- therapy : Hemoglobinopathies, Thalassemia.
- Geography, Humans, Information Systems, International Cooperation, Internet, Research Design.
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.
DOI: 10.1080/03630260903089177
PubMed: 19657830
Affiliations:
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Lederer</name><affiliation wicri:level="1"><nlm:affiliation>Molecular Genetics Thalassaemia Department, The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus. lederer@cing.ac.cy</nlm:affiliation><country xml:lang="fr">Chypre (pays)</country><wicri:regionArea>Molecular Genetics Thalassaemia Department, The Cyprus Institute of Neurology and Genetics, Nicosia</wicri:regionArea><wicri:noRegion>Nicosia</wicri:noRegion></affiliation></author><author><name sortKey="Basak, A Nazli" sort="Basak, A Nazli" uniqKey="Basak A" first="A Nazli" last="Basak">A Nazli Basak</name></author><author><name sortKey="Aydinok, Yesim" sort="Aydinok, Yesim" uniqKey="Aydinok Y" first="Yesim" last="Aydinok">Yesim Aydinok</name></author><author><name sortKey="Christou, Soteroula" sort="Christou, Soteroula" uniqKey="Christou S" first="Soteroula" last="Christou">Soteroula Christou</name></author><author><name sortKey="El Beshlawy, Amal" sort="El Beshlawy, Amal" uniqKey="El Beshlawy A" first="Amal" last="El-Beshlawy">Amal El-Beshlawy</name></author><author><name sortKey="Eleftheriou, Androulla" sort="Eleftheriou, Androulla" uniqKey="Eleftheriou A" first="Androulla" last="Eleftheriou">Androulla Eleftheriou</name></author><author><name sortKey="Fattoum, Slaheddine" sort="Fattoum, Slaheddine" uniqKey="Fattoum S" first="Slaheddine" last="Fattoum">Slaheddine Fattoum</name></author><author><name sortKey="Felice, Alex E" sort="Felice, Alex E" uniqKey="Felice A" first="Alex E" last="Felice">Alex E. Felice</name></author><author><name sortKey="Fibach, Eitan" sort="Fibach, Eitan" uniqKey="Fibach E" first="Eitan" last="Fibach">Eitan Fibach</name></author><author><name sortKey="Galanello, Renzo" sort="Galanello, Renzo" uniqKey="Galanello R" first="Renzo" last="Galanello">Renzo Galanello</name></author><author><name sortKey="Gambari, Roberto" sort="Gambari, Roberto" uniqKey="Gambari R" first="Roberto" last="Gambari">Roberto Gambari</name></author><author><name sortKey="Gavrila, Lucian" sort="Gavrila, Lucian" uniqKey="Gavrila L" first="Lucian" last="Gavrila">Lucian Gavrila</name></author><author><name sortKey="Giordano, Piero C" sort="Giordano, Piero C" uniqKey="Giordano P" first="Piero C" last="Giordano">Piero C. Giordano</name></author><author><name sortKey="Grosveld, Frank" sort="Grosveld, Frank" uniqKey="Grosveld F" first="Frank" last="Grosveld">Frank Grosveld</name></author><author><name sortKey="Hassapopoulou, Helen" sort="Hassapopoulou, Helen" uniqKey="Hassapopoulou H" first="Helen" last="Hassapopoulou">Helen Hassapopoulou</name></author><author><name sortKey="Hladka, Eva" sort="Hladka, Eva" uniqKey="Hladka E" first="Eva" last="Hladka">Eva Hladka</name></author><author><name sortKey="Kanavakis, Emmanuel" sort="Kanavakis, Emmanuel" uniqKey="Kanavakis E" first="Emmanuel" last="Kanavakis">Emmanuel Kanavakis</name></author><author><name sortKey="Locatelli, Franco" sort="Locatelli, Franco" uniqKey="Locatelli F" first="Franco" last="Locatelli">Franco Locatelli</name></author><author><name sortKey="Old, John" sort="Old, John" uniqKey="Old J" first="John" last="Old">John Old</name></author><author><name sortKey="Patrinos, George P" sort="Patrinos, George P" uniqKey="Patrinos G" first="George P" last="Patrinos">George P. Patrinos</name></author><author><name sortKey="Romeo, Giovanni" sort="Romeo, Giovanni" uniqKey="Romeo G" first="Giovanni" last="Romeo">Giovanni Romeo</name></author><author><name sortKey="Taher, Ali" sort="Taher, Ali" uniqKey="Taher A" first="Ali" last="Taher">Ali Taher</name></author><author><name sortKey="Traeger Synodinos, Joanne" sort="Traeger Synodinos, Joanne" uniqKey="Traeger Synodinos J" first="Joanne" last="Traeger-Synodinos">Joanne Traeger-Synodinos</name></author><author><name sortKey="Vassiliou, Panayiotis" sort="Vassiliou, Panayiotis" uniqKey="Vassiliou P" first="Panayiotis" last="Vassiliou">Panayiotis Vassiliou</name></author><author><name sortKey="Villegas, Ana" sort="Villegas, Ana" uniqKey="Villegas A" first="Ana" last="Villegas">Ana Villegas</name></author><author><name sortKey="Voskaridou, Ersi" sort="Voskaridou, Ersi" uniqKey="Voskaridou E" first="Ersi" last="Voskaridou">Ersi Voskaridou</name></author><author><name sortKey="Wajcman, Henri" sort="Wajcman, Henri" uniqKey="Wajcman H" first="Henri" last="Wajcman">Henri Wajcman</name></author><author><name sortKey="Zafeiropoulos, Anastasios" sort="Zafeiropoulos, Anastasios" uniqKey="Zafeiropoulos A" first="Anastasios" last="Zafeiropoulos">Anastasios Zafeiropoulos</name></author><author><name sortKey="Kleanthous, Marina" sort="Kleanthous, Marina" uniqKey="Kleanthous M" first="Marina" last="Kleanthous">Marina Kleanthous</name></author></analytic><series><title level="j">Hemoglobin</title><idno type="eISSN">1532-432X</idno><imprint><date when="2009" type="published">2009</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Europe (MeSH)</term><term>Geography (MeSH)</term><term>Hemoglobinopathies (therapy)</term><term>Humans (MeSH)</term><term>Information Systems (MeSH)</term><term>International Cooperation (MeSH)</term><term>Internet (MeSH)</term><term>Mediterranean Region (MeSH)</term><term>Research Design (MeSH)</term><term>Thalassemia (therapy)</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Coopération internationale (MeSH)</term><term>Europe (MeSH)</term><term>Géographie (MeSH)</term><term>Humains (MeSH)</term><term>Hémoglobinopathies (thérapie)</term><term>Internet (MeSH)</term><term>Plan de recherche (MeSH)</term><term>Région méditerranéenne (MeSH)</term><term>Systèmes d'information (MeSH)</term><term>Thalassémie (thérapie)</term></keywords><keywords scheme="MESH" type="geographic" xml:lang="en"><term>Europe</term><term>Mediterranean Region</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Hemoglobinopathies</term><term>Thalassemia</term></keywords><keywords scheme="MESH" qualifier="thérapie" xml:lang="fr"><term>Hémoglobinopathies</term><term>Thalassémie</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Geography</term><term>Humans</term><term>Information Systems</term><term>International Cooperation</term><term>Internet</term><term>Research Design</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Coopération internationale</term><term>Europe</term><term>Géographie</term><term>Humains</term><term>Internet</term><term>Plan de recherche</term><term>Région méditerranéenne</term><term>Systèmes d'information</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">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.</div></front></TEI><affiliations><list><country><li>Chypre (pays)</li></country></list><tree><noCountry><name sortKey="Aydinok, Yesim" sort="Aydinok, Yesim" uniqKey="Aydinok Y" first="Yesim" last="Aydinok">Yesim Aydinok</name><name sortKey="Basak, A Nazli" sort="Basak, A Nazli" uniqKey="Basak A" first="A Nazli" last="Basak">A Nazli Basak</name><name sortKey="Christou, Soteroula" sort="Christou, Soteroula" uniqKey="Christou S" first="Soteroula" last="Christou">Soteroula Christou</name><name sortKey="El Beshlawy, Amal" sort="El Beshlawy, Amal" uniqKey="El Beshlawy A" first="Amal" last="El-Beshlawy">Amal El-Beshlawy</name><name sortKey="Eleftheriou, Androulla" sort="Eleftheriou, Androulla" uniqKey="Eleftheriou A" first="Androulla" last="Eleftheriou">Androulla Eleftheriou</name><name sortKey="Fattoum, Slaheddine" sort="Fattoum, Slaheddine" uniqKey="Fattoum S" first="Slaheddine" last="Fattoum">Slaheddine Fattoum</name><name sortKey="Felice, Alex E" sort="Felice, Alex E" uniqKey="Felice A" first="Alex E" last="Felice">Alex E. Felice</name><name sortKey="Fibach, Eitan" sort="Fibach, Eitan" uniqKey="Fibach E" first="Eitan" last="Fibach">Eitan Fibach</name><name sortKey="Galanello, Renzo" sort="Galanello, Renzo" uniqKey="Galanello R" first="Renzo" last="Galanello">Renzo Galanello</name><name sortKey="Gambari, Roberto" sort="Gambari, Roberto" uniqKey="Gambari R" first="Roberto" last="Gambari">Roberto Gambari</name><name sortKey="Gavrila, Lucian" sort="Gavrila, Lucian" uniqKey="Gavrila L" first="Lucian" last="Gavrila">Lucian Gavrila</name><name sortKey="Giordano, Piero C" sort="Giordano, Piero C" uniqKey="Giordano P" first="Piero C" last="Giordano">Piero C. Giordano</name><name sortKey="Grosveld, Frank" sort="Grosveld, Frank" uniqKey="Grosveld F" first="Frank" last="Grosveld">Frank Grosveld</name><name sortKey="Hassapopoulou, Helen" sort="Hassapopoulou, Helen" uniqKey="Hassapopoulou H" first="Helen" last="Hassapopoulou">Helen Hassapopoulou</name><name sortKey="Hladka, Eva" sort="Hladka, Eva" uniqKey="Hladka E" first="Eva" last="Hladka">Eva Hladka</name><name sortKey="Kanavakis, Emmanuel" sort="Kanavakis, Emmanuel" uniqKey="Kanavakis E" first="Emmanuel" last="Kanavakis">Emmanuel Kanavakis</name><name sortKey="Kleanthous, Marina" sort="Kleanthous, Marina" uniqKey="Kleanthous M" first="Marina" last="Kleanthous">Marina Kleanthous</name><name sortKey="Locatelli, Franco" sort="Locatelli, Franco" uniqKey="Locatelli F" first="Franco" last="Locatelli">Franco Locatelli</name><name sortKey="Old, John" sort="Old, John" uniqKey="Old J" first="John" last="Old">John Old</name><name sortKey="Patrinos, George P" sort="Patrinos, George P" uniqKey="Patrinos G" first="George P" last="Patrinos">George P. Patrinos</name><name sortKey="Romeo, Giovanni" sort="Romeo, Giovanni" uniqKey="Romeo G" first="Giovanni" last="Romeo">Giovanni Romeo</name><name sortKey="Taher, Ali" sort="Taher, Ali" uniqKey="Taher A" first="Ali" last="Taher">Ali Taher</name><name sortKey="Traeger Synodinos, Joanne" sort="Traeger Synodinos, Joanne" uniqKey="Traeger Synodinos J" first="Joanne" last="Traeger-Synodinos">Joanne Traeger-Synodinos</name><name sortKey="Vassiliou, Panayiotis" sort="Vassiliou, Panayiotis" uniqKey="Vassiliou P" first="Panayiotis" last="Vassiliou">Panayiotis Vassiliou</name><name sortKey="Villegas, Ana" sort="Villegas, Ana" uniqKey="Villegas A" first="Ana" last="Villegas">Ana Villegas</name><name sortKey="Voskaridou, Ersi" sort="Voskaridou, Ersi" uniqKey="Voskaridou E" first="Ersi" last="Voskaridou">Ersi Voskaridou</name><name sortKey="Wajcman, Henri" sort="Wajcman, Henri" uniqKey="Wajcman H" first="Henri" last="Wajcman">Henri Wajcman</name><name sortKey="Zafeiropoulos, Anastasios" sort="Zafeiropoulos, Anastasios" uniqKey="Zafeiropoulos A" first="Anastasios" last="Zafeiropoulos">Anastasios Zafeiropoulos</name></noCountry><country name="Chypre (pays)"><noRegion><name sortKey="Lederer, Carsten W" sort="Lederer, Carsten W" uniqKey="Lederer C" first="Carsten W" last="Lederer">Carsten W. 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