The promotion of epilepsy
research in Europe
Janet Mifsud, Asla Pitkanen, Holger Lerche
CEA Chapter Convention Rhodes 26 June 2010
Benefits of Participation
• collaborative, multidisciplinary and translational
research preferred, working on both basic and
clinical research
• prestige and benchmarking performance
• networking opportunities – research and teaching
• mobility of staff and students
• increase in research capacity and funding
• note that FP7 operates on the basis of cofinancing,and you cannot make a financial profit. So
funding should not be your only reason for
participation
Do you wish to help to promote epilepsy
research in Europe?
If yes……
Useful tactics
• Set up a lobbying group : bring ILAE and IBE
chapters together and work with other countries
• Collect data about numbers of PWE in your country
• Translate ınformation in your language
• Raise your institution’s profile: Go to the press
• Identify and foster key political contacts especially
in Brussels and EU institutions
• Make use of information: Epilepsia, 2009
Research priorities in
epilepsy for the next
decade – a
representative view of
the European scientific
community.
Epilepsia 2009; 3: 571578.
ILAE Commission on
European Affairs Task Force
EU presidency
• For the next countries which will hold presidency of
EU, try to get epilepsy on the agenda
–
–
–
–
–
–
July - Dec 2010
Jan - June 2011
July - Dec 2011
Jan - June 2012
July - Dec 2012
Jan - June 2013
Belgium
Hungary
Poland
Denmark
Cyprus
Ireland
Example : EBC
•
In an exciting
development for the
EBC, the Hungarian
government has
chosen neuro
psychiatric diseases as
its main R&Dtheme
under the Hungarian
EU Presidency in the
first part of 2011.
•
Under the leadership of
Tamàs Freund, a
former EBCBoard
member, a workshop
was held in Budapest
on 10 May to plan the
central event on this
theme, a congress to
be held over 18-19
March 2011, during
annual Brain
Awareness Week.
Suggestions for concerted action
•
Go to http://cordis.europa.eu/fp7/ncp_en.html
See who your national contact point for Health is,
and try to get a few concrete suggestions from
them wrt including epilepsy in FP7.
•
We then recommend that you obtain the name of
the Programme Committee Member (PCM) for
Health from the NCP and contact them directly and
give them this text:
•
In this way we are passing the same message
across Europe……
•
This already worked to a certain extent in 2011 call
Proposed text for PCMs to include in 2012 call
Suggested Theme
1. Health
2. TRANSLATING RESEARCH FOR HUMAN HEALTH
2.2.1. Brain and brain-related diseases
Topic Description
Epileptogenesis: Understanding the causes of epilepsy to improve
therapy
Abstract
The causes and pathogenesis of epilepsy, summarized commonly under
the term ‘epileptogenesis’, are still largely unknown. This topic invites
collaborative research projects with focus on specific aspects of
epileptogenesis
including
genetic,
epigenetic,
transcriptional,
developmental, and inflammatory mechanisms. A better understanding
of the individual causes of epilepsy will pave the way to personalized
medicine with selection of patients for novel, rational based treatment
strategies.
Funding Scheme:
Large scale integrated research project
Justification / Expected Impact :
•
Epilepsy is a common multifactorial neurological disorder affecting 6
million people in Europe. The total European health costs associated with
epilepsy have been estimated to be €15.5 billion. About one third of all
epilepsy patients remain refractory to current therapy of this devastating
and disabling disease, implying an urgent need for novel treatment
strategies.
•
Research of the last two decades – with a fundamental impact from
leading European scientists organized in the mentioned European
research networks – has revealed the first molecular mechanisms in
different genetic and acquired forms of epilepsy. To better understand and
integrate epileptogenic mechanisms into pathways is a major challenge of
epilepsy research and will have significant therapeutic implications for
novel rational and personalized therapeutic concepts.
Justification / Expected Impact (cont)
• From our previous experiences, we know that understanding
of such a complex human brain disease is only possible with
the added value of a large, multidisciplinary research
consortium providing the necessary numbers of both patients
and techniques.
• Likewise, a translation into novel treatments requires a
concerted approach with the necessary infrastructure.
• Given the importance of epilepsy as a common disease, such
kind of research promises to have important consequences for
European health care.
Refer to previous projects
• EU-funded Integrated Project Epicure
– (Giuliano Avanzini; avanzini@istituto-besta.it;
www.epicureproject.eu)
• European project EpiGen
– (Sanjay Sisodiya; s.sisodiya@ion.ucl.ac.uk;
www.epilepsygenetics.eu)
• EU-funded Integrated Project Euripides
– (Mathias Koepp; m.koepp@ion.ucl.ac.uk; www.euripideseurope.com )
Other possible schemes : COST
• COST www.cost.eu European Cooperation in Science
and Technology, allows the coordination of
nationally-funded research on a European level.
• It makes it possible for various national institutes,
universities and private industry to work jointly on a
wide range of R&D activities.
• It has been successfully used to maximise European
synergy and added value in research co- operation
and is a useful tool to further European integration.
• Ease of access for institutions from non-member
countries also makes COST a very interesting and
successful tool for tackling topics of a truly global
nature.
DG Education: Life Long learning
• Lifelong Learning Programme (LLP) enables
individuals at all stages of their lives to pursue
stimulating learning opportunities across Europe.
• It is an umbrella programme integrating various
educational and training initiatives. LLP is divided in
four sectorial sub programmes and four so called
'transversal' programmes.
– Comenius for schools
– Erasmus for higher education
– Leonardo da Vinci for vocational education and
training
– Grundtvig for adult education
DG Sanco Health programme
http://ec.europa.eu/eahc/health/index.html
– The Health Programme is the European Commission’s
main instrument for implementing the EU health strategy.
– It aims, through projects, to improve the level of
physical and mental health and well-being of EU citizens
and reduce health inequalities throughout the Community.
– it supports health-promoting and preventive actions that
address the major health determinants
– The first Programme of Community action in the field of
public health (2003-2008) financed over 300 projects and
other actions.
Links
•
Contact your local MEP and inform him/her about
epilepsy
http://www.europarl.europa.eu/members.do?lang
uage=EN
•
Check if you know any MEPs from your country
who are on the European Parliament Committee
on Industry, Research and Energy
http://www.europarl.europa.eu/activities/expert/c
ommittees/allMembers.do?committee=2424&lang
uage=EN
•
Links
•
Go to http://cordis.europa.eu/fp7/home_en.html
and surf through the website: different
programmes, calls, information services etc.
•
Go to the advisory groups for FP 7 Health and
check if you know anyone from the list and
contact them.
http://ec.europa.eu/research/fp7/pdf/advisorygroups/health-members.pdf#pagemode=none
How to get inside knowledge?
Become an expert evaluator for FP7
https://cordis.europa.eu/emmfp7/
Become an expert evaluator for DG Sanco
http://ec.europa.eu/eahc/phea_ami/
Continue the discussion….
CEA - EU Symposium Discussion Group
Funding of epilepsy research in Europe
Chairs:
Bialer M (Israel) Baulac M (France)
• Need of research funding: a voice of the patient Williams E (United Kingdom)
• EU funding instruments Tosetti P (Belgium)
• Industry as a partner of EU research funding for epilepsy Salonen R (Finland)
Monday 28 June 11:30-13:00 Hall 7 (Colossus)