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Collaboration Networks

  • Hopital Henri Mondor, France

    Contact Dr Henri Wacjman
    Job Title Director
    Role Researcher
    Address Hopital Henri Mondor, 51 Avenue du Mal De Lattre de Tassigny, INSERM U645, 94010 Creteil
    Organisation Hopital Henri Mondor, Creteil, France
    Activities
    • Collaboration Network
    • Treatment
    • Research
    • Diagnosis
    • Scientific Society
    • Patient Society






    Country France
    E-mail wajcman@im3.inserm.fr
    URL
  • EuroGentest

    Description
    Genetic services in Europe, while based on high quality scientific know-how, suffer from an intolerably high level of technical errors and poor reporting, caused by a lack of structuring and complementarity at the European level and the absence of a common European objective to provide quality services to all its consumers now and in the future. Diverse and heterogeneous quality schemes, lack of reference systems and differing Member State (MS) regulations, have added to the overall disorganization and fragmentation of services.

    Nevertheless, genetic services face an ever-increasing number of requests for testing, while widespread susceptibility testing and pharmacogenetic tests are lurking on the horizon.

    With the active participation of stakeholders, the proposed EuroGentest NoE (Network of Excellence) intends to structure, harmonize and improve the overall quality of these services, while paying substantial attention to issues resulting from testing including legal, health policies and health economic impact, IPR (Intellectual Property Rights), ethical and social questions: confidentiality, informed consent, employment and insurance.

    The EuroGentest NoE will improve the organization and harmonization of external quality assessment/assurance schemes, facilitate the development of guidelines and support the accreditation/certification of the genetic services. In addition, collaboration between academic centers and the private sector on technology development and the validation of genetic tests, should generate more rapid translation and accurate, more economical and overall better testing technologies. A quality website, with all relevant information will be developed and made accessible to experts and customers.

    With the help of Parent and Patient Support Groups, the EuroGentest NoE will collect quality tools for education of different categories of stakeholders.Training for personnel both from within and from outside the EU will be provided.

    The already substantial number of female scientists involved in the EuroGentest NoE, will be further increased and a female scientist will assume responsibility of supervising gender issues.

    Finally, the EuroGentest NoE aims at becoming a model for similar initiatives in developing countries and will provide appropriate support for their development.
    The proposed program will create a leading European Network of Excellence based on the four principles of medical ethics.

  • European Network for Rare and Congenital Anaemias (ENERCA)

    Description
    ENERCA is a network where different experts are working together with the purpose of offering an improved public health service to professional medical practitioners and patients in every aspect of rare anaemias.
    ENERCA allows us to share all the advances and experience in the field of rare anaemias, congenital and non congenital. The simple aim is to help those people who suffer from these diseases.
  • EDDNAL

    Description
    The EDDNAL (European Directory of DNA Diagnostic Laboratories) database contains a small collection of European diagnostic laboratories involved in the diagnosis of thalassaemias.
  • ITHANET

    Description
    ITHANET is a Euromediterranean network of research centres conducting molecular and clinical research of thalassaemia and related haemoglobinopathies. The consortium of ITHANET comprises all major European research institutions active in the field and a number of collaborating partner institutions from non-EU Mediterranean and Black-Sea countries. ITHANET associates 25 partners from 16 countries, including scientific and medical communities, patients and their families, and patient associations. One of the key goals of Ithanet was setting up the Ithanet web portal for haemoglobinopathies you are presently looking at.

  • ORPHANET

    Description
    ORPHANET is a database of rare diseases and orphan drugs for the general public. Its aim is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases. Orphanet includes a rare diseases encyclopaedia, which is expert-authored and peer-reviewed, and a directory of services. This directory includes information on specialised outpatient clinics, clinical laboratories, research activities and support groups.
  • SAFE

    Description
    The SAFE (Special Non-Invasive Advances in Fetal and Neonatal Evaluation) Network started on 1 March 2004, and is set to run for a period of 5 years. It is sponsored under the EU Framework 6 programme and has 50 partners from 19 countries currently participating. SAFE aims to lay the foundations for European advances in NIPD (Non Invasive Prenatal Diagnosis) and NS (Neonatal Screening). It is a programme designed to achieve intellectual and practical integration with a view to enhance the efficacy of NIPD and NS for genetic disorders within and beyond the European Community. This programme is interested in the use of cell-free circulatory fetal DNA as a screening tool to determine pregnancies at risk for heterozygous Mendelian genetic disorders, such as the haemoglobinopathies prevalent in large proportions of the European population.
  • TCRN

    Description
    TCRN is an acronym for Thalassemia (Cooley's Anaemia) Clinical Research Network. The purpose of the TCRN is to accelerate research in the management of thalassaemia, standardise existing treatments, and evaluate new ones in a network of clinical centers in North America. The emphasis will be on clinical trials that help identify optimal therapy. Therapeutic trials may involve investigational drugs, drugs already approved but not currently used, and drugs currently used.

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