The promotion of epilepsy research in Europe

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The promotion of epilepsy research in Europe

• Janet Mifsud, Reetta Kalviainen

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Do you wish to help to promote epilepsy research
in Europe?If yes
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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 information in your language
• Raise your institutions profile Go to the press
• Identify and foster key political contacts
  especially in Brussels and EU institutions
• Make use of information Epilepsia, 2009

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Research priorities in epilepsy for the next
decade a representative view of the European
scientific community. Epilepsia 2009 3
571-578. ILAE Commission on European Affairs
Task Force
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EU presidency

• For the next countries which will hold presidency
  of EU, try to get epilepsy on the agenda
• July - Dec 2010 Belgium
• Jan - June 2011 Hungary
• July - Dec 2011 Poland
• Jan - June 2012 Denmark
• July - Dec 2012 Cyprus
• Jan - June 2013 Ireland

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Example EBC

• In an exciting development for the EBC, the
  Hungarian government has chosen neuro psychiatric
  diseases as its main RDtheme 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.

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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

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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.

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• 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.

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• 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.

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Refer to previous projects

• EU-funded Integrated Project Epicure
• (Giuliano Avanzini avanzini_at_istituto-besta.it
  www.epicureproject.eu)
• European project EpiGen
• (Sanjay Sisodiya s.sisodiya_at_ion.ucl.ac.uk
  www.epilepsygenetics.eu)
• EU-funded Integrated Project Euripides
• (Mathias Koepp m.koepp_at_ion.ucl.ac.uk
  www.euripides-europe.com )

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Links

• Contact your local MEP and inform him/her about
  epilepsy http//www.europarl.europa.eu/members.do?
  languageEN
• 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/co
  mmittees/allMembers.do?committee2424languageEN

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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
  /advisory-groups/health-members.pdfpagemodenone

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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/