n. kerlero de rosbo , j. bismuth, s. berrih-aknin, and the euromyasthenia consortium
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The EuroMyasthenia Project: What has it brought to the MG community?. N. Kerlero de Rosbo , J. Bismuth, S. Berrih-Aknin, and the EuroMyasthenia Consortium. The Team. The Objectives. The Results. The EuroMyasthenia Project. - PowerPoint PPT PresentationTRANSCRIPT
N. Kerlero de Rosbo, J. Bismuth, S. Berrih-Aknin, and the EuroMyasthenia Consortium
The EuroMyasthenia Project: What has it brought to the MG community?
The Team The Objectives The Results
The EuroMyasthenia Project
Started officially on January 1, 2006, will end on December 31, 2009
Motivated by the need to coordinate efforts to improve knowledge on MG and optimize patient management to level out differences between European countries
Project co-financed from the EU Public Health Programme 2003-2008
Communication and Dissemination
Scientists and clinicians from all over Europe: from 24 in 2006 to 36 in 2009
Expansion of the network
Number of patients’ associations: from 7 in 2006 to 17 in 2009
200613 countries
England
Spain
France
Sweden
NorwayNetherlands
Germany
ItalyBulgaria
Greece
Israel
Turkey
USA
10 Associated and 21 Collaborating Partners
200719 countries
10 Associated and 33 Collaborating Partners
Northern Ireland
Scotland
Cyprus
Poland
Romania
Croatia
10 Associated and 40 Collaborating Partners
200822 countries
Portugal
Denmark
Czech Republic
10 Associated and 43 Collaborating Partners
200925 countries
SlovakRepublic
Ireland
Switzerland
Support of EuroMyasthenia Federation of European MG patients’ Associations now established as EuMGA
Incentive to creation of new MGAs (Greece, Czech Republic)
Communication and Dissemination
Website: www.euromyasthenia.org
Disseminates activities of the EuroMyasthenia Network
Provides MG-related information to patients, scientists, and clinicians
Is a link between patients and clinicians through the coordinator
Provides access to expert partner’s knowledge for help with patient management to isolated
clinicians with little expertise on MG
Newsletter: Quarterly through www.euromyasthenia.org
Visits to www.euromyasthenia.org throughout the world 27 Oct. 2008- 26 Nov. 2009
Informative booklets in several European languages: From www.euromyasthenia.org; also printed for distribution in neurological centers throughout Europe.
Informative leaflet: Distributed throughout Europe via the EuroMyasthenia Network partners
Communication and Dissemination
Questionnaires for patients and neurologists: designed and distributed throughout Europe to gather information on disease status of MG patients, their needs, and expectancies from the EuroMyasthenia project.
Evaluation
Country What are your expectations from EuroMyasthenia?(%)
Better
communication
More info. on MG
List of neurologists
Info. on associations
Practical advice
Regular updates Others
Greece 38 69 54 38 58 73 5Romania 47 84 50 39 81 85 15Sweden 22 63 33 20 50 70 2Cyprus 78 89 11 33 89 89 11Croatia 12 86 7 5 64 4 0Scotland 20 43 20 26 43 63 0Oxford 20 42 28 22 52 48 0Holland 50 64 43 29 57 79 0France 34 70 51 19 57 79 4Average 36 68 33 26 61 65 4
More information, more practical advice, more regular updates
Database
Database with anonymized data accessible remotely to validated partners
Items included have been ratified by clinical and scientific experts of the network
Partners entering patients’ data according to ethical regulations in their respective countries
Data entered as mandatory items for the “basic” database, or as optional data to be included in “targeted” databases” (e.g. expanded database dedicated to psycho-socioeconomical epidemiology)
A questionnaire has been validated (C. Tallaksen’s group) to study a group of health determinants that EuroMyasthenia Partners believe might be important environmental modifying factors in MG disease and, to this date, have not been studied thoroughly.
Socio-economic factors (education, occupation, income) Environment (exposure of harmful agents, infection, pollution etc) Health behavior (smoking, alcohol, diet, drugs, physical activity) Personal and biological factors (overweight, hormones)
Psycho-socioeconomical determinants for MG
Database
Database with anonymized data accessible remotely to validated partners
Items included have been ratified by clinical and scientific experts of the network
Partners entering patients’ data according to ethical regulations in their respective countries
Data entered as mandatory items for the “basic” database, or as optional data to be included in “targeted” databases” (e.g. expanded database dedicated to psycho-socioeconomical epidemiology)
Will serve towards epidemiological studies at the European level
Will enable the sharing of precious samples towards biochemical, immunological, and genetic studies at the European level
Standardization
Anonimyzed serum samples from 10 different patients with generalized MGReference lab: Oxford Partner (A. Vincent’s group)
Laboratory:
PL1 PL2 PL3 PL4 PL5 PL6 PL7 PL8 PL9 PL10
AChRMuSK
Abs
100% consensus between labs and with Reference Lab
Guidelines on diagnosis and treatment/management of patientsClinical:
Final versions can be downloaded from EuroMyasthenia website
Standardization of anti-AChR and MuSK antibody testing in other countriesConsensus on “borderline” samples?
Other important outcomes of EuroMyasthenia
Instrumental in the establishment of EuMGA, the federation of European MG associations, which it strongly supports
Improved communication between scientists, patients, and health professionals, through its partners, but also through its website Emphasis: scientists, clinicians, and patients associations must work together Research must involve patients through patients’ associations
Milan, March 16, 2009: Meeting of the Working Group Towards the Constitution of a European Federation of MG Patients’ Associations
Establishment of EuMGA
March 23, 2009: Company Limited by Guarantee under U.K. law with a registered office in England under the name “European Myasthenia Gravis Association” (Acronym EuMGA, web site www.eumga.eu).
Present Board of Directors: Ms. Josipa Gazibara (President, Croatia), Mr. Peter Finney (Treasurer, UK), and Board Members Dr. Nadia Radulescu (Romania), Ms. Cristina Vatteroni (Italy), Mr. Johannes Gravgaard (Denmark), and Dr. Fulvio Baggi (Italy)
Nov. 30, 2009: First General Annual Meeting
EuMGA Code EuMGA Status Association full name
EuMGA001 Full Member - Voting Croatian Myasthenia Gravis Association
EuMGA002 Full Member - Voting Myasthenia Gravis Association of the UK
EuMGA003 Full Member - Voting Romanian Myasthenia Gravis Association
EuMGA004 Full Member - Voting Associazione Italiana Miastenia Onlus - Pisa
EuMGA005 Full Member - Voting Associazione Italiana Miastenia Grave - Milano
EuMGA006 Associated Member - Non voting
Danish Myasthenia Gravis Association
EuMGA014 Pending Approval Handicapped and Disabled people of Kosova
EuMGA011 Pending Approval Francophone MG Association
EuMGA010 Pending Approval Hellenic Myasthenia Gravis Association
EuMGA012 Pending Approval Myasthenia Gravis Association of Finland.
EuMGA008 Pending Approval The Cyprus Myasthenia Gravis Association
EuMGA013 Pending Approval Netherland VSN, MG Working Group
EuMGA007 Pending Approval MG Association of Hungary
EuMGA now:
Other important outcomes of EuroMyasthenia
Go-between for the MG Community at the European level
Resolving of Mestinon crisis 1 in Romania Sharing Mestinon resources crisis 2 in Romania Patients Network interactions (calls for help, for advice from all over Europe;
appreciations, for newsletter in particular; suggestions/comments…)
Incentive for creation of MGAs
Czech Republic MGA Hellenic MGA
Instrumental in the establishment of EuMGA, the federation of European MG associations, which it strongly supports
Improved communication between scientists, patients, and health professionals, through its partners, but also through its website Emphasis: scientists, clinicians, and patients associations must work together Research must involve patients through patients’ associations
The Future….?