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….?