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European Myasthenia Gravis Network [-] [2005105] - Project
General objectives

Myasthenia gravis (MG) is a disabling chronic neuromuscular disease affecting mostly females. There is a need for combining the efforts to improve the knowledge on this disease for the following reasons: 1. MG is a rare disease (prevalence about 10/100 000); 2. it is heterogeneous; 3. it could be life-threatening, when the respiratory muscles are affected; 4. the diagnosis is not always easy to make; 5. the clinical criterion and therapeutic approaches are different among the European countries; 6. there are aspects in the pathogenesis of the disease that are not yet clear; 7. there is no cure for this disease; 8. many of the drugs used for the treatment of MG have severe side-effects 9. some pharmaceutical molecules, such as anaesthesia agents are life-threatening for the patients.Our main objectives are: 1. To improve knowledge and information on the different forms of MG; 2. To improve standardisation of data collection; 3. To promote education and training, namely for the integration of new member states, 4. To identify important health indicators for MG; 5. To collect data and perform epidemiological studies at European level in order to improve the classification of MG disease` subtypes.

Strategic relevance and contribution to the public health programme

Health information strand. Improving information and knowledge for the development of public health.
Developing strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats,including gender specific health threats and rare diseases.
The strategy of EuroMyasthenia is to bring together 31 groups from 14 different countries, including 3 major categories: 1. scientists who have made substantial contributions to the understanding of MG; 2. clinicians experienced with the management of MG patients; 3. associations of MG patients.

Methods and means

The creation of an internet site available to the European health portal will be based on previous European experience in Public Heath networks (WP1 and WP2). A part of this site will be open to all citizens. It will include all information reporting the progress of the project and a forum. The psycho-socio-economical determinants will be analysed through a questionnaire prepared in several languages and sent to MG patients through the organisations of patients (WP6). Finally the epidemiological analysis will be implemented with the help of technical competences of several collaborators (WP7). The European database will be based on national databases, and will include Standardized clinical, biological and genetic data from MG patients (WP4). Indicators recommended by the ECHI-2 network will be introduced. Collaborating with other European projects, in particular Orphanet and Eurordis will promote synergy and avoid duplication. To standardise the clinical and biological parameters, reference reagents will be distributed to the centers performing the tests and personnel will be educated in expert centers (WP5). Methodological problems will be discussed during the meetings. Evaluating the progress of the project will be done through the external Evaluation and Advisory Board (WP3). The preparation of the various Guidelines and leaflets will be discussed during the meetings. All reports and communication documents will be under the supervision of the internal evaluation committee. This project brings together multiple competences and will enrol several personnel to fit the tasks described in the workpackages. However for specific technical tasks such as the creation of a professional website or database, the internal evaluation committee could decide whether subcontracting with SMEs is required.

Expected outcomes period

Work package 1: Coordination of the project. Work package 2: Dissemination of the results. Work package 3: Evaluation of the project. Work package 4: Database. Work package 5: Laboratory and clinical standardisation. Work package 6: Psycho-socioeconomical determinants. Work package 7: Epidemiological analysis

Details
Start date: 01/01/2006
End date: 01/01/2009
Duration: 36 month(s)
Current status: Finalised
Programme title: First Programme of Community action in the field of public health (2003-2008)
EC Contribution: € 770 400,00
Portfolio: Rare diseases