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 Le projet EuroMyasthenia Le projet EuroMyasthenia Partenaires associés Partenaires associés Partenaires collaborant au réseau Partenaires collaborant au réseau Associazione Italiana Miastenia Onlus (MIA) [EN] Croatian Myasthenia Gravis Association Cyprus Myasthenia Gravis Association [en] Czech Myasthenia Gravis Association [en] Danish Myasthenia Gravis Association [en] Association Française contre les Myopathies (AFM) [en] Association des Myasthéniques Isolés et Solidaires (AMIS) German Myasthenia Gravis Association (DMG) [en] Hellenic Myasthenia Gravis Association [EN] Italian Association against Myasthenia (AIM) [en] Orphanet [en] Romanian Myasthenia Gravis Association [en] Swedish Neurological Diseases Association (NHR) [en] UK Myasthenia Gravis Association (MGA) [en] Adams David [en], France Beeson David [en], United Kingdom Brenner Talma [en], Israel Christadoss Premkumar [en], United States de Carvalho Mamede [en], Portugal Deymeer Feza [en], Turkey Evoli Amelia [en], Italy Eymard Bruno [en], France Farrugia Maria Elena [en], Scotland Fuchs Sara [en], Israel Hantai Daniel [en], France Illa Isabel [en], Spain Kostera-Pruszczyk Anna [en], Poland Maddison Paul [EN], United Kingdom McConville John [en], Ireland Martins da Silva Ana [en], Portugal Melms Arthur, Germany Milanov Ivan [en], Bulgaria Mouly Vincent [en], France Pitha Jiri [en], Czech Republic Saoudi Abdel [en], France Saruhan-Direskeneli Güher [en], Turkey Schaeffer Laurent [en], France Sharshar Tarek [en], France Sostarko Marija [en], Croatia Souroujon Miri [en], Israel Tuzun Erdem [en], United States Verschuuren Jan [en], The Netherlands Zagar Marija [en], Croatia Lettre d'information Lettre d'information Comment utiliser ce site ? Comment utiliser ce site ? To submit [en] To submit [en]
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 | Le projet EuroMyasthenia - Vue d'ensemble : Activités [en] |  |
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Several activities will be developed according to the main objectives:
- Health Information. Referral laboratories will be established and experts will provide professional assistance and information throughout the European Community. A leaflet will be prepared for patients about their disease. An officially endorsed Website and a forum will be provided. It will be open to all citizens but access to database will be restricted for professionals. An electronic newsletter will be sent to all members every two months.
- European database. EuroMyasthenia will result in the creation of a European database that will collect data from a large part of Europe and thus permit epidemiological studies, taking into account genetic, immunological, histological, clinical, and hormonal aspects. Health indicators recommended by the ECHI-2 network and relevant to MG will be also included. At least 5000 patients from the European countries participating to this network will be included during the implementation of this project.
- Epidemiological data collection. Epidemiological studies will be performed to monitor occurrence of the different forms of MG for individual countries and to identify new markers associated with disease pathogenic mechanisms. In turn, a list of recommended indicators will be established for the surveillance of Myasthenia Gravis in the member states and accession countries.
- Standardization and Quality Assessment. European Guidelines for diagnosis and clinical management of MG will be prepared. A quality control system for laboratory diagnosis of the different forms of MG will be established. By educational and training visits in the expert centers, scientific and medical personnel will improve healthcare quality. In addition, the promotion of information between the different research groups will contribute to improve the knowledge of the immunologic and genetic pathological mechanisms of MG.
Date de création : 24/10/2006 - 5:09 PM
Dernière modification : 22/05/2007 - 10:46 AM
Catégorie : Le projet EuroMyasthenia
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