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  • Call for proposals for ESF Research Conferences

    The European Science Foundation invites you to submit proposals for topics for its 2011 Research Conferences.

    Proposals must cover one of the following scientific domains:

    Molecular Biology+: molecular biology at the interface with other science disciplines (up to 5 conferences to take place in 2011)

    • Brain, Technology and Cognition: focus on "Action" (1 conference to take place in 2011)
    • Mathematics (up to 6 conferences to take place in 2011)
    • Physics/Biophysics and Environmental Sciences (up to 5 conferences to take place in 2011)
    • Social Sciences and Humanities (up to 4 conferences to take place in 2011)

    Scientists with successful proposals will become conference chairs and will be in charge of the scientific programme and overall scientific quality of the conference. ESF will provide full conference organisational and logistical support.

    Proposals must be submitted electronically via the ESF Research Conferences website at www.esf.org/conferences/call.

    Closing date for submissions: 15th September 2009 (midnight CET)

    For more information: visit www.esf.org/conferences/call or email conferences-proposals@esf.org

    Kind regards,

    ESF Research Conferences

     

    European Science Foundation | 149 avenue Louise, Box 14 | B-1050 Brussels

    Tel.: +32 (0) 2533 2020 | Fax: +32 (0) 2538 8486

    Email: conferences-info@esf.org| Skype: esf.conferences | www.esf.org/conferences

  • ITHANET and EUMEDCONNECT2 in Online Video

    A video has been premiered at the TNC2009 in Malaga, highlighting how ITHANET and connectivity through EUMEDCONNECT2 improve the outlook of thalassemia sufferers by facilitating medical research. Please, find the video for download as a podcast at the EUMEDCONNECT2 web site or as a streaming video on Youtube.

  • Worldwide Grid helps in the fight against heart disease

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    The latest work on the genetic causes of one of the world’s biggest killers, coronary artery disease, will be published in the March 2009 issue of Nature Genetics. The research done by teams from the Cardiogenics consortium used the Enabling Grids for E-sciencE (EGEE) infrastructure. EGEE manages the world’s largest multi-disciplinary computing grid and enabled the researchers to do two years’ work in fewer than 45 days. This allowed them to identify possible genetic candidates for the causes of a disease which kills over two million people a year in Europe alone.

     

    Coronary artery disease (CAD) is the most common form of heart disease and is a leading cause of death worldwide. It is one of the root causes of angina, heart failure and arrhythmias. This work could allow researchers to better understand why the disease develops and may offer new approaches for pharmacological prevention and treatment.

     

    “Until recently, we looked at one variation at a time when trying to find new genes associated with disease”, said David Tregouet, Pierre & Marie Curie University (UPMC), France. “In this work we are using an original approach which lets us look at several variations at once. So, instead of investigating the effect on CAD risk of the 378,000 individual genetic markers available in this project, more than 8.1 million combinations were tested. We could do this large number of calculations thanks to EGEE”.

     

    The work was done in three stages to successfully narrow down the genetic sequences within a person's chromosomes that could make them susceptible to CAD. In the first stage, almost 8.1 million configurations of genetic markers were examined and 29 specific combinations were identified as possibly associated with susceptibility to CAD. Focussing on these 29 combinations, the second stage was able to bring this number down to just one combination of four genetic markers confirmed to be strongly associated with the risk of CAD. When these four genetic markers were investigated in additional studies, covering a total of almost 12,000 individuals, there was a strong correlation between their presence and the risk of having CAD.


    One of the possible explanations behind why these four genetic markers seem to indicate that a person may be at an increased risk of CAD, is that they overlap with genes that regulate an enzyme called lipoprotein (a). A raised level of lipoprotein (a) is used by doctors around the world to diagnose CAD. When the Cardiogenics consortium compared the levels of the enzyme in one of the studies, they found that there was a strong correlation between high lipoprotein levels and the presence of the identified gene sequences.


    Notes for Editors


    Follow the EGEE User Forum live via GridCast at http://gridtalk-project.blogspot.com/ and Twitter at
    http://twitter.com/EnablingGrids. Photos from the conference will be tagged on Flickr with "egeeuf09."


    Press contact: Neasan O’Neil, EGEE Press and Events Manager, +44 (0)79 6281 8712, n.oneill@qmul.ac.uk. For
    conference details visit http://egee-uf4.eu-egee.org/


    Cardiogenics, an EU-project coordinated in Lübeck, Germany, aims to discover genetic variations leading to coronary artery disease, to uncover the underlying disease mechanisms and help to develop new treatments. For more information see www.cardiogenics.eu.


    The Enabling Grids for E-sciencE (EGEE) project is co-funded by the European Commission. The project aims to provide researchers, in both academia and industry, with access to major computing resources, independent of their geographic locations.


    EGEE's main aims are:
    1. To build a secure, reliable and robust grid infrastructure
    2. To supply a computing service for many scientific disciplines
    3. To attract, engage and support a wide range of users from science and industry, and provide them with extensive technical and training support.


    For more information see http://www.eu-egee.org or contact Catherine Gater, EGEE Dissemination, Outreach and
    Communications Manager, on + 41 (0)22 767 41 76 or email Catherine.Gater@cern.ch.
  • Preparing the Net

    Over the coming weeks, the ITHANET Portal will see major changes in its structure and interactivity. The protocols and clinical guidelines will have a more prominent link on the home page and will move to a new wiki-based environment. This means that you can more easily add your own protocols or correct existing ones. The new section will also hold an expanded and user-editable dictionary of ITHANET-related terms, supplementing more advanced ITHANET Portal contents.
  • Safe Handover - ITHANET Portal to See Significant Development

    The ITHANET Portal has received funding from the Cypriot Research Promotion Foundation for further development over the next two years. Changes will include more interactivity, implementation of multi-language support, expansion of database and text content and streamlining of menus and interfaces.

    The main objective of the next phase of development is the establishment of the ITHANET Portal as a daily scientific and diagnostic tool in research and treatment, and as a resource for patients, carriers, and all those interested in haemoglobinopathies. The ITHANET Team envisages a second-generation web site that expands and interlinks the existing text and database sections, but is easily accessible and, through wiki-based implementation of substantial parts of its content, virtually self-maintaining long-term. The planned multi-language support will attract a greater numbers of lay users, introduce them to e-learning, facilitate their discussion of pertaining issues with their peers, and move the discussion and resolution of health problems into the sphere of everyday interactions and experiences. Moreover, an improved structure and interface will make information held on the ITHANET Portal readily accessible for patients and health professionals alike, and will help create an interface between them through forum discussions of medical and bioethical topics of interest.
  • ENERCA gains EU funding to continue its services to Rare Anaemias across Europe

    ENERCA is a European network for rare and congenital anaemias. It is a project co-funded by the European Commission (DG SANCO) through the Executive Agency for Health and Consumers (EACH). ENERCA has promoted awareness and knowledge on rare anaemias both for the public and for health professionals through its website since 2003.

    Rare anaemias include some 90 syndromes, each one rarely encountered in clinical practice, and so are often undiagnosed or misdiagnosed, and given inappropriate treatment. These problems are shared with many other rare disorders and there is a close collaboration of the ENERCA project with the  EURopean Organisation for Rare DISeases (EURORDIS) and Orphanet.

    The ENERCA project has successfully completed two cycles, ENERCA I and II, and the project to be funded is now labeled ENERCA III. This new version includes added objectives such as:

    • The creation of a network of expert centres for rare anaemias, with the adoption of criteria for such centres based on those adopted by the Rare Diseases Task Force of DG SANCO.
    • The harmonization of diagnostic procedures and clinical practices through agreed guidelines and standards.
    • Education and training of health professionals and dissemination of information to patients and the public, through workshops and other activities in addition to the development of the website.
    • Encouraging collaborative research.
    Rare anaemias include the haemoglobin disorders in Europe. In recognition of the increasing frequency and importance of these disorders they have been allocated separate workpackages in ENERCA III, one for Thalassaemia (led by the Thalassaemia International Federation) and one for Sickle Cell Disease (led by Dr Beatrice Gulbis). To promote collaborative, multi-centre research, which is paramount in the case of rare diseases, ENERCA is to collaborate with the ITHANET project and to use the e-infrastructure to assist researchers in their communications and exchange of data.  
  • Ithanet case study by EUMED CONNECT-Dante

    A case study was published recently by EUMED CONNECT network.
    Attached you can find the case study.

     

  • Ithanet presented to EUMED-EVENT 2

    The Ithanet project was presented by Ithanet Partner 1 to the Eumed-Event 2 held at Amman, Jordan, 4th of November 2008
  • Poster Presentations presented in Singapore 2008

    Dear All,
    Find attached the posters that were presented at the Thalassemia meeting in Singapore 2008.

  • A recent publication on JAK-2 mutation and Thalassemia Intermedia

    1: Mol Biol Rep. 2008 Sep 10.
     

    Absence of JAK2 V617F mutation in thalassemia intermedia patients.

    Department of Internal Medicine, American University of Beirut Medical Center (AUBMC), Beirut, Lebanon.

    JAK2 is a cytoplasmic tyrosine kinase that has a vital role in signal transduction from several hemopoietic growth factor receptors. The JAK2 V617F mutation has been implicated in a variety of diseases mainly related to myeloproliferative disorders including polycythemia Vera, essential thrombocythemia, and idiopathic Myelofibrosis but has not been previously described in Thalassemia patients. We studied 36 Lebanese patients diagnosed with thalassemia intermedia and assessed the presence or absence of the JAK2 V617F mutation using JAK2 activating mutation assay (In VivoScribe Technologies) and Polymerase Chain Reaction (PCR). None of the thalassemia intermedia patients were positive for this mutation. To our knowledge, this study is the first to determine the status of JAK2 V617F mutation in thalassemia intermedia patients and expands the international published literature on JAK2. The latter's V617F mutation does not seem to play a role in this hematologically important clinical entity.

  • A New Publication for Dr. Ali Taher

    Kindly find below a new publication for Dr. Taher

    1: Acta Haematol. 2008 Nov 12;120(2):112-116. Survival and Complications of Beta-Thalassemia in Lebanon. 

    A Decade's Experience of Centralized Care.

    Charafeddine K, Isma'eel H, Charafeddine M, Inati A, Koussa S, Naja M, Taher A.

    American University of Beirut Medical Center, Beirut, Lebanon.

     

    beta-Thalassemia major is a debilitating disease with a considerable incidence in Lebanon (around 2-3% carriership). The present article describes our experience to this day with 214 patients, emphasizing the survival of beta-thalassemia major and development of complications among patients with different parameters. Fifteen deaths were reported. The most common cause of death was heart failure (60%). Patients with a ferritin level of 3,000 ng/ml showed better survival than those with a level >3,000 ng/ml (p < 0.006). In addition, patients with a ferritin level of 1,500 ng/ml showed less complication-free survival than those with a level >1,500 ng/ml (p < 0.024). High level of ferritin (1,500 ng/ml) is associated with increased risk of heart failure. Overall and complication-free survival were statistically different among patients classified according to birth cohort or ferritin level. The Chronic Care Center, a multidisciplinary center located in the suburbs of Beirut, led to an increase in complication-free as well as overall survival. Although patients are being diagnosed earlier and chelation therapy is being initiated at an earlier age, complications due to iron overload still persist. The introduction of new oral iron chelators and better iron overload quantitation methods will most likely modify this picture, and a follow-up study will examine their impact. Copyright © 2008 S. Karger AG, Basel.

  • Ithanet Portal Update

    Dear All,

    We would like to inform you that the database section in the Portal Website has been renamed to IthanetBase and contains:

    • Protocols, both Clinical and Laboratory
    • Mutation database for both alpha and beta thalassaemia
    • Population-Mutation Frequencies which are directly related to the mutation database
    • SNPs The data were collected and collated by Dr. John Old with the contribution of all Ithanet Partners.

    Please visit the IthanetBase and send us your comments

    We also want to announce that the Ithanet Portal website (http://portal.ithanet.eu) will be changed to www.ithanet.eu.

    The new website will be published soon and there will be a direct link from the old website to the new one until all users get familiar with the change.

    Best regards,

    Ithanet Portal Team

  • A recent publication for Dr. Ali Taher

    Haematologica. 2008 Aug 12. 

    Pregnancy outcome in patients with {beta}-thalassemia intermedia at two tertiary care centers, in Beirut and Milan.

    American University of Beirut Medical Center, Beirut, Lebanon;

    B-thalassemia intermedia at two tertiary care centers, in Beirut and Milan b-thalassemia intermedia (TI) patients can present with a severe clinical disease at 2-6 years of age or remain asymptomatic until adult life. They suffer from mild anemia (hemoglobin (Hb) between 7-10 g/dL), and are usually transfusion independent.1 Pregnancy in these women, whether spontaneous or through assisted reproductive technology, represents a challenge for the treating physician.  The literature is limited by the scarcity of studies about TI and pregnancy. We report on the pregnancy outcome of TI women in two tertiary care centers, the Chronic Care Center, Hazmieh, Lebanon and the Hereditary Anemia Center, Milan, Italy over a 15-year period.

  • New Publication for Dr. Ali Taher

    Dear Partners, Find below a recently published paper for Dr. Ali Taher.

    Long-term experience with deferasirox (ICL670), a once-daily oral iron chelator, in the treatment of transfusional iron overload.

    University of Milan, Department of Internal Medicine, Policlinico Foundation IRCCS, Milan, Italy. maria.cappellini@unimi.it

    BACKGROUND: Chronic iron overload from frequent blood transfusions to treat patients with severe anaemias leads to significant morbidity and mortality. While deferoxamine, the current standard of care, is an effective iron chelator, it requires subcutaneous infusion for 8-12 h/day, 5-7 days/week. This regimen is problematic and impacts significantly on patients' daily life. OBJECTIVE: To evaluate the efficacy and tolerability of deferasirox, a once-daily oral iron chelator. METHOD: To review the available data reported in peer-reviewed journals (using PubMed) and at medical conferences. RESULTS/CONCLUSIONS: Deferasirox is effective in reducing or maintaining iron burden in patients with transfusion-dependent anaemias. As deferasirox is orally administered, the inconvenience of parenteral administration with deferasirox is avoided. Deferasirox improves patient satisfaction and is expected to improve compliance with iron chelation therapy.

  • New Publications for Dr. Ali Taher

    Dear Partners,

     Kindly find below an excerpt of a letter to the editor published recently,

    Correlation of liver iron concentration determined by R2 MRI with serum ferritin in patients with thalassemia intermedia.

    Ali Taher,1,2 Fuad El Rassi,1 Hussain Isma’eel,1 Suzane Koussa,2 Adlette Inati,2,3 Maria Domenica Cappellini4

    1American University of Beirut, Beirut; 2Chronic Care Center, Hazmieh, 3Rafik Hariri University Hospital, Beirut, Lebanon, and 4Fondazione Policlinico IRCCS, University of Milan, Italy Correspondence: Ali Taher, MD, Department of Internal Medicine Hematology-Oncology Division, American University of Beirut, Letters to the Editor

    Thalassemia intermedia is a highly diverse group of thalassemia syndromes associated with anemia and a range of specific complications, such as extramedullary hematopoiesis, leg ulcers, gallstones and a hypercoagulable state, which are uncommon in patients with thalassemia major.1 The degree of anemia present in patients with thalassemia intermedia is typically mild and generally does not require regular blood transfusion therapy. However, patients can still be at risk of the clinical sequelae of iron overload (as commonly seen in regularly transfused thalassemia major patients) due to increased intestinal iron absorption triggered by chronic anemia, ineffective erythropoiesis and, possibly, decreased serum hepcidin.2,3 The principal methods of determining body iron levels are measurement of serum ferritin levels and assessment of liver iron concentration from biopsy tissue. (...)

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