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The leading voices in the epilepsy community... ...around one table


Irish EU Presidency

European Forum on


your

invitation

to

the leading voices in the epilepsy community...

...around one table

Dublin 25th -27th May 2013

n Epilepsy Research


the leading voices in the epilepsy community... around one table

Researchers National Contact Points Clinicians National Policy Makers MEPs IBE Associations ILAE Chapters EU Commissioners Persons with epilepsy

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The initiative...

The goals...

An undeniable fact...

The European Forum on

More focused research,

Basic and clinical research

Epilepsy Research will take

to improve diagnosis and

in epilepsy in Europe

place in Dublin, Ireland on

treatment.

has provided discoveries

25th – 27th May 2013.

To raise public awareness

This forum aims to

and reduce stigma

bring together European

associated with epilepsy.

strategy for increased funding for epilepsy research, ahead of the

decades. Continuing innovative research is vital.

epilepsy researchers and policy makers, to discuss

over the last number of

Access to optimal standards of care across Europe for people with epilepsy.

2014 launch of the EU 8th Framework Programme Horizon 2020.

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MEMBERS OF THE ORGANISING COMMITTEE This forum is organised in conjunction with Epilepsy Advocacy Europe (EAE), a Joint Task Force of the ILAE Commission for European Affairs (CEA) & the IBE European Regional Executive Committee (EREC). EU FP7 coordination, promotion and forum logistics are managed by the ILAE and IBE In-house Congress Secretariat.

Mike Glynn, Ireland, (IBE) Co-Chair

Emilio Perucca, Italy, (ILAE) Co-Chair

Asla Pitk채nen Finland

Norman Delanty Ireland

Christian Elger Germany

Reetta K채lvi채inen Finland

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ADVISORY COMMITTEE Renzo Guerrini (Italy) Christoph Helmstaedter (Germany) Henrik Klitgaard (Belgium) Ruediger Koehling (Germany) Merab Kokaia (Sweden) Holger Lerche (Germany) Solomon L MoshĂŠ (USA) Antonio Represa (Spain/France) Hanneke de Boer The Netherlands

Michel Baulac France

Ley Sander (UK) Raman Sankar (USA) Margitta Seeck (Switzerland) Kevin J Staley (USA) TorbjĂśrn Tomson (Sweden)

Secretariat Eoin Sheanon Programme Coordination

Janet Mifsud Malta

Edele Sheehan Delegate Coordination

Ann Little Ireland

Richard Holmes International Director of Meetings

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We would like to express appreciation to the following people, who assisted the Topic Chairs in the formulation of each of the sessions: Bert Aldenkamp (The Netherlands) Gus Baker (UK) Ettore Beghi (Italy) Christophe Bernard (France) Martin Brodie (UK) Catherine Chiron (France)

Antonio Gil-Nagel (Spain)

Heiko Luhmann (Germany)

PĂŠter HalĂĄsz (Hungary)

Andrey Mazarati (USA)

David Henshall (Ireland)

Philippe Ryvlin (France)

Gilles Huberfeld (France)

Dieter Schmidt (Germany)

Ann Jacoby (UK)

Maria Thom (UK)

Joanna Jedrzejczak (Poland)

Patrick Van Bogaert (Belgium)

Helen Cross (UK)

Hana Kubova (Czech Republic)

Paula Fernandes (Brazil)

Dimitri Kullmann (UK)

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Annamaria Vezzani (Italy)


WELCOME MESSAGE

Dear Friends and Colleagues,

FROM THE ORGANISING

On behalf of the Organising Committee, it is our pleasure to invite you to attend the European Forum on Epilepsy Research (EFER2013) in Dublin, on May 25-27, 2013.

COMMITTEE

This forum is a collaborative research conference co-funded by the 7th Framework Programme of the European Commission in conjunction with the Irish Presidency of the European Union in 2013 and the European Month of the Brain – May, 2013. European epilepsy initiatives have gathered both pace and community in recent years. In September 2011 the Written Declaration on Epilepsy was successfully passed by the European Parliament. A call for epilepsy research, worth up to €36 million, was included in the 7th Framework Programme of the European Commission and direct funding for epilepsy awareness initiatives has been made available. In 2011 and 2012 two highly successful European Epilepsy Days have heightened public awareness. The European Forum on Epilepsy Research aims to bring together leading researchers and policy makers in Europe to discuss a coordinated strategy for epilepsy research, ahead of the launch of the 8th Framework Programme Horizon 2020 in 2014. The Forum will also discuss initiatives aimed at reducing the stigma associated with epilepsy and strategies that can improve standards of care across Europe. To assist in the development of research proposals there will be a pre-forum workshop to learn about the new features of the Horizon 2020 applications, the time schedule and the decisionmaking process. There will also be a reception with FP7 National Contact Points from the Member States. The two-and-a-half day EFER2013 has 6 main sessions: • Epilepsy Stigma Across Europe • Standards of Care • Epilepsy in the Developing Brain • New Targets for Innovative Diagnostics and Treatment • What is Required for Prevention and Cure? • Epilepsy and Co-Morbidities – Special Focus on Ageing and Mental Health We look forward to your positive response and participation in this landmark initiative for epilepsy and epilepsy research in Europe. Mike Glynn (Ireland), (IBE), Co-Chair

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Emilio Perucca (Italy), (ILAE), Co-Chair


MESSAGE FROM THE EUROPEAN ADVOCATES FOR EPILEPSY GROUP

The European Advocates for Epilepsy Group welcomed the support of Members of European Parliament in the passing of the Written Declaration on Epilepsy in September 2011. This was a first step in highlighting the need for improved services and support for epilepsy research in order to improve the quality of life of persons with epilepsy. Many positive developments have ensued since the successful passing of the Declaration over a year ago, including: * Up to ₏36 million call for epilepsy research in the 7th Framework Programme of the European Commission * Direct funding for epilepsy awareness initiatives * Two highly successful European Epilepsy Days In May 2013, the inaugural European Forum on Epilepsy Research will be hosted in The Dublin Convention Centre, Dublin. This forum is a collaborative research conference funded by the 7th Framework Programme of the European Commission in conjunction with the Irish Presidency of the European Union in 2013 and the European Month of the Brain – May, 2013. We are very pleased to support this major Epilepsy Research Forum, which will provide a platform for leading epilepsy researchers and policy makers in Europe to discuss a coordinated strategy for epilepsy research into the future and we are confident that their deliberations will have a major impact on establishing the future direction for epilepsy research in Europe. This will result in an improved quality of life for all people with epilepsy and those who care for them and we applaud this impressive initiative. President Gay Mitchell, Ireland, EPP Vice Presidents David Casa, Malta, EPP Nirj Deva, UK, ECR Pat the Cope Gallagher, Ireland, ALDE Peter Skinner, UK, S&D Angelika Werthmann, Austria, NI

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PROGRAMME AT A GLANCE

Saturday 25th May

Sunday 26th May

Monday 27th May

08:00

Registration Opens

08:30 – 10.00

09:00 - 13.00

09.00 - 10.00

What is Required for Prevention and Cure?

European Chapter Convention

Opening Problem Statement & Patients’ View 10.00 – 11.30

10.00 – 10.30

Epilepsy Stigma Across Europe (Chairs: M Glynn, L Sander)

11.30 – 12.00 Coffee 12.00 – 13.30

Standards of Care (Chairs: C Elger, N Delanty)

13.30 – 14.30 Lunch 16:00 - 18:30

Pre-Forum Workshop

14.30 – 16.00

(Chair: J Mifsud)

Epilepsy in the Developing Brain

Training: How to lobby? Information on Horizon 2020

(Chairs: R Guerrini, A Represa)

Networking with NCPs

16.00 – 16.30 Coffee

19:30 - 21:30

16.30 – 18.00

Reception

New Targets for Innovative Diagnostics and Treatment

Mansion House Lord Mayor’s Residence

(Chairs: A Pitkänen, T Tomson)

(Chairs: M Baulac, H Klitgaard)

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Coffee

10.30 – 12.00

10.30 – 12.00

Epilepsy and Co-Morbidities

Political Awareness and Epilepsy

Special Focus on Ageing and Mental Health (Chairs: C Helmstadter, R Sankar)

Interactive Session (Chair: Gay Mitchell, MEP)

12.00 – 13.30

Recommendations for Next Steps


topic information

Epilepsy Stigma Across Europe Standards of Care Epilepsy in the Developing Brain New Targets for Innovative Diagnostics and Treatment What is Required for Prevention and Cure?

Epilepsy and Co-Morbidities – Special Focus on Ageing and Mental Health

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Topic 1

Epilepsy imposes considerable

Presentations and Speakers:

Epilepsy Stigma

burden on society and

Defining stigma in epilepsy

Across Europe

has a major impact on

and its current status –

the individual, family and,

Ley Sander (UK)

Chairs:

indirectly, on the community.

Mike Glynn (Ireland),

Part of the burden may be

Ley Sander (UK)

due to the physical hazards

Epilepsy stigma in Europe – Joanna Jedrzejczak (Poland)

of epilepsy resulting from the

How to measure and reduce

unpredictability of seizures;

epilepsy stigma –

however, for the person with

Paula Fernandes (Brazil)

epilepsy, social exclusion as a result of negative attitudes

How stigma in HIV/AIDs was

of others is a major part of

reduced –

the psychosocial burden and

TBC

leads to poor self-esteem. This stigma, as a result of having epilepsy, brings a susceptibility of its own since it leads to discrimination. In this session, we will discuss stigma and ways of ameliorating this major issue.

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What the EU can do to help us reduce epilepsy stigma – Mike Glynn (Ireland)


Topic 2 Standards of Care Chairs: Norman Delanty (Ireland), Christian Elger (Germany) This session will explore the current levels and standards of care across countries of the European Union, and will also compare relevant parameters across other regions in the world. The session will attempt to define the minimum standard of care that should be available for persons with epilepsy and related disorders in the European Union. Areas of epilepsy care to be examined will include the following:

1. Access to specialist care following a suspected first seizure or new diagnosis of epilepsy.

Presentations and Speakers:

2. Access to important initial appropriate diagnostic specialist investigations, such as EEG and MRI.

European Union –

3. Access to video EEG monitoring in cases of diagnostic uncertainty or for potential presurgical evaluation.

compare with other regions in

4. Access to an epilepsy surgery centre where relevant.

epilepsy surgery evaluation

5. Role and number of epilepsy clinical nurse specialists and advanced nurse practitioners. 6. Support from neuropsychology and neuropsychiatry specialists. 7. Availability and pricing of anti-epileptic drugs, including legislation with regard to generic substitution.

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Current access to basic epilepsy care across the Norman Delanty (Ireland) How does EU epilepsy care the world? – Péter Halász (Hungary) Variation in access to across Europe – Antonio Gil-Nagel (Spain) What needs to be done to provide minimum standards of epilepsy care across Europe – Christian Elger (Germany)


Topic 3

impairment. However,

Performing early drug trials

Epilepsy in the

this has not been clearly

in severe paediatric epilepsies

Developing Brain

demonstrated. Coordinated

and developing new drugs

EU studies might achieve a

based on genetic discoveries

critical mass of patients to

should be encouraged.

Chairs: Renzo Guerrini (Italy),

be prospectively studied in specifically designed trials

Presentations and Speakers:

Antonio Represa (Spain/France)

exploring the relationship

Epilepsy in the developing

A number of fundamental

between epilepsy onset

brain – the size of the

questions need to be

and cognitive outcome.

challenge in the EU –

addressed: Why do certain

Neuropathology is the

Renzo Guerrini (Italy)

seizures emerge or regress

major determinant of long-

at particular ages? How do

term epilepsy prognosis.

developmental malformations

However, relatively few

lead to seizures? Why is there

neuropathologists throughout

a latency delay from genetic

Europe have a dedicated

Developmental

mutation or cortical dysplasia

research interest in epilepsy

neuropathology in epilepsy –

to seizures onset? How is a

pathology and neuropathology

Maria Thom (UK)

neuronal or neuronal-glial

research is underfunded.

network transformed into

Tissue banking and integrated

an epileptogenic network?

neuropathology should be

What are early markers of

prioritised through research,

epileptogenecity? These

training and education. Drug

Neurocognitive development

questions can only be

trials are currently performed

in paediatric epilepsy –

addressed by an EU

in clinical contexts that liken

Patrick Van Bogaert (Belgium)

consortium of basic and

adult epilepsies while the

clinical scientists. Early onset,

epileptic encephalopathies

How to make progress –

severe epilepsy has been

are often excluded and

Antonio Represa (France)

blamed for causing cognitive

remain therapeutic orphans.

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Antiepileptic drug trials and development in children – Catherine Chiron (France)

Epilepsy and early brain development – Heiko Luhmann (Germany)


Topic 4

are indicating that some

Presentations and Speakers:

New Targets for

proinflammatory pathways

Why do we need new

Innovative

are activated in seizure foci.

biomarkers of the epileptic

These processes involve glial

focus and the new drug

cells, the most abundant

targets –

type of nerve cell, which

Michel Baulac (France),

modulate neurotransmission

Henrik Klitgaard (Belgium)

Diagnostics and Treatment Chairs: Michel Baulac (France), Henrik Klitgaard (Belgium) Although the newer generation AEDs have reduced sideeffects, none of them has a higher efficacy than previous drugs. This failure underscores the necessity to reconsider the typical targets of our AEDs, namely transmitter release, receptors and ion channels, and to try to counter, more specifically, epileptogenesis and ictogenesis through innovative targets.

in epileptic activities. Genetic approaches should also

Non-neuronal modulation of

focus on the non-coding

epileptic activities:

parts of the human genome,

glial cells and inflammatory

in particular “microRNAs”,

processes –

which modulate inter-

Annamaria Vezzani (Italy)

cellular signaling pathways controlling brain excitability. New biomarkers of the epileptic zone are identified

Non-coding genes as targets of the future in epilepsy – David Henshall (Ireland)

from intracerebral recordings

Toward a more accurate

from microelectrodes,

delimitation of the

and ultimately from living

epileptic focus in a surgical

post-operative tissues.

perspective –

Multidisciplinary approaches,

Margitta Seeck (Switzerland)

using optogenetics, nanotechnologies,

This workshop will highlight

chemogenetics, gene therapy,

emerging, novel focuses

and microstimulations will

of epilepsy research and

permit us to develop new

treatment. Experimental

therapeutic strategies.

and clinical evidence

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Innovative multidisciplinary approaches and treatment strategies – Merab Kokaia (Sweden)


Topic 5

However, it is likely that more

What is Required

targets remain undiscovered.

for Prevention and

In addition, translation of

Cure? Chairs: Asla Pitkänen (Finland), Torbjörn Tomson (Sweden) Persons who have experienced acquired brain injury, e.g. stroke, brain inflammation, or trauma, as well as those with brain malformations or channelopathies have an elevated risk of developing epilepsy. However, there are no

laboratory findings to clinical use is a major challenge, which relates to issues such

Presentations and Speakers: Current status: the unmet needs – Asla Pitkänen (Finland), Torbjörn Tomson (Sweden)

as identification of the target

Identifying target populations

patient population, availability

and designing clinical trials –

of biomarkers for patient

Ettore Beghi (Italy)

stratification and prediction of treatment response,

Removing obstacles in

design of clinical studies,

translation of preclinical

and elimination of regulatory

discoveries to clinic –

obstacles. This session will

Dimitri Kullman (UK)

address all these issues and generate discussion on how to

Revealing the mechanisms

advance each of the topics.

of epileptogenesis to design innovative treatments – what

antiepileptogenic treatments

are the tools? –

available and prevention

Holger Lerche (Germany)

of the development of epilepsy in individuals at risk

How to achieve the goal –

remains as a major unmet

European perspective? –

need. Recent laboratory

Dieter Schmidt (Germany)

experiments have revealed several potential mechanisms that can be targeted to prevent epileptogenesis.

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Topic 6

It has been long recognized

Developmental aspects

Epilepsy and

that there is more to epilepsy

of both epilepsy and its

than seizures. The prevalence

comorbidities, as well as

of such neurobehavioral

frequently reported reciprocal

Special Focus on

abnormalities as cognitive

connection between these

Ageing and Mental

and mood disorders, autism

disorders, both add other

spectrum disorder, attention

dimensions to the already

deficit and hyperactivity

complex problem.

Co-Morbidities –

Health

disorder (ADHD) is Chairs:

significantly higher among

Christoph Helmstaedter

patients with epilepsy than in

(Germany), Raman Sankar (USA)

the general population. A longheld view, that comorbidities of epilepsy represent mere epiphenomena of seizures, has undergone substantial transformation during the past decade, as emerging clinical and experimental evidence suggest the involvement of specific neurobiological mechanisms in the evolution of neurobehavioral deficits in epilepsy patients.

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In the light of significant progress in effective seizure management in many epilepsy patients, the importance of neurobehavioral comorbidities has become even more acute, as the latter frequently are more detrimental to patients’ quality of life than seizures. This calls for serious increase in efforts to effectively predict, manage and, ideally, to cure these comorbidities.


Therefore, coordinated

The final goal of the described

multicentre clinical,

research efforts would lie in

translational and basic

producing an armamentarium

research studies focusing

of evidence-based diagnostic

on epidemiology,

tools and therapeutic

neurophysiology, imaging,

interventions which would

genetics, epigenetics

at minimum mitigate and at

and pharmacology of

maximum prevent or abolish

neurobehavioral comorbidities

neurobehavioral comorbidities

of epilepsy are absolutely

of epilepsy and thus improve

instrumental for ensuring

quality of life of those

tangible progress in the field.

epilepsy patients who suffer

Clinical research should

from the said comorbidities.

Presentations and Speakers: Incidence of major comorbidities of epilepsy and impact on quality of life – Gus Baker (UK) Positive and negative cognitive and behavioural effects of epilepsy and its treatment – Bert Aldenkamp (The Netherlands) Neuroimaging and neurophysiological

put particular emphasis

contributions to the

on longitudinal studies in

understanding of

large cohorts of patients

comorbidities in epilepsy –

and groups at risk, while

Philippe Ryvlin (France)

translational research should primarily focus on

Using animal models to study

the development of valid

cognitive and psychiatric

preclinical systems which

comorbidities of epilepsy –

would allow investigation of

Andrey Mazarati (USA)

fundamental mechanisms of

What can be done in the EU

epilepsy comorbidities.

to better understand and counteract the comorbidities of epilepsy? Christoph Helmstaedter (Germany)

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FORUM INFORMATION

Venue

Forum Dates

Dates for your Diary

The Convention Centre Dublin

25th to 27th May 2013

Online Registration will open

North Wall Quay Spencer Dock Dublin 1 Ireland Tel: +353 1 856 6000 Website: www.theccd.ie The Convention Centre Dublin (The CCD) is Ireland’s new world class international conference and event venue. The CCD sits at the heart of Dublin’s transport hub with excellent air, road, rail and sea connections, meaning The CCD is only minutes from the airport, motorway network, Port Tunnel, rail stations and ferry terminals.

in February 2013. Check

Forum Website www.epilepsyresearcheurope.org All details regarding the forum will be announced on the forum website as they become available. Registration and accommodation reservations will be processed online. Please also refer to the forum website for scientific topic

www.epilepsyresearcheurope.org for the latest updates.

Mailing List If you would like to be included on the congress mailing list, to receive updates about the European Forum on Epilepsy Research, please submit your contact details via the congress website

updates.

www.epilepsyresearcheurope.org Details on ILAE and IBE

or contact us at

epilepsy congresses

dublin@epilepsycongress.org.

worldwide can be found on the epilepsy portal site at www.epilepsycongress.org

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Accommodation There is a wide choice of accommodation in Dublin, to meet every budget, within close proximity to The Convention Centre Dublin.

Climate Similar to much of northwest Europe, Dublin experiences a maritime climate with mild winters, cool summers, and a lack of temperature extremes. Rainfall is spread evenly throughout the year. The average temperature for May is between 9 – 15oC.

Currency The unit of currency is the Euro.

Transport in Dublin Taxis and buses are the two main modes of transport from the airport to the city centre. The Aircoach (www.aircoach.ie) runs a regular 24hour bus service covering most of the principal hotels in the city centre and suburbs. Dublin has an extensive bus network, for getting quickly around the city. The DART (Dublin Area Rapid Transit) train service runs along the coastline, serving a number of stations both north and south of the city centre. Trains run roughly every 15 minutes. For exact times, check www.irishrail.ie. The LUAS tram service operates two lines (green and red) through the city centre. See www.luas.ie for more detailed information.

Visas Visitors to Ireland may need a visa, depending on their country of citizenship. For more information, see http://www.citizensinformation.ie/en/travel_and_recreation/travel_to_ ireland/visas_for_tourists_visiting_ireland.html

We would like to acknowledge the support of the Dublin Convention Bureau and Meet in Ireland.

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The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) would like to acknowledge the European Union co-funding of the 2013 European Forum on Epilepsy Research, through grant agreement No HEALTH-F1-2012-306020, assigned under FP7 2012 (The Seventh Framework Programme of the European Union for the funding of research and innovation in Europe).


ILAE/IBE Congress Secretariat 7 Priory Hall, Stillorgan, Dublin 18, Ireland Tel: +353 1 2056720 Fax: +353 1 2056156 Email: dublin@epilepsycongress.org Website: www.epilepsyresearcheurope.org


European Forum on Epilepsy Research