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Addiction

Schizophrenia

Neuro Pediatrics

Fit to Work

ADHD

Brain injury

Stroke prevention

AtriAl FibrilAtionNutritioN

Interoperability set to reshape the healthcare environment in Europe

European regulations mean MS patients get the right drugs too late

Unlocking the langUage of mUsic:

interview with Olga Bobrovnikova, concert pianist with MS

Looking forward to Year of theBrain in europe

EBCnewsThe Official Quarterly Newsletter of the European Brain Council

I would like to welcome you all back to the latest edition of EBCnews. This year is particularly special for the European Brain Council (EBC) because 2014 has been designated Year of the Brain (YotB).Primarily, YotB highlights the needs of the millions of

Europeans currently affected by brain diseases and raises societal awareness of the importance of everyone nurturing and protecting their most vital asset – their brain. YotB encapsulates and celebrates the beliefs, values, and efforts of the EBC and all those patients and individuals involved in brain diseases.

In this edition of the magazine, we will look at the efforts of researchers, patients and policy-makers across Europe to raise awareness of the brain and the diseases that afflict it. Amongst the many inspirational stories, Russian YotB Ambassador, Olga Bobrovnikova tells us how she balances her multiple sclerosis with a highly successful career as an international concert pianist; English neurology Professor Gavin Giovannoni from Barts and The London School of Medicine and Dentistry

shares his thoughts on why current European regulations prevent patients from receiving the right drugs at a clinically optimal time; and Robert Madelin, EC Director General for Communications Networks, Content and Technology, provides a glimpse of efforts to unite access to different hospitals and healthcare services across Europe with an eHealth initiative that aims to achieve

unparalleled interoperability, facilitating better, safer and speedier patient outcomes.

We hear from Professor Eduard Auff, former president of the Austrian Society of Neurology, the Croatian Brain Council on their efforts to drum up support for brain research and an update on Brain: the Inside Story, a traveling exhibition aimed at the general public currently showing in Milan.

Importantly, YotB brings together over 200 organisations representing patients, scientific communities, healthcare professionals and the pharmaceutical and biotech industries whose work is related to the brain. EBC thanks the European Commission, European Parliament and EU Member States for all their support.

I would like to thank you all for your continued dedication and contributions to the united effort to overcome Europe’s huge burden of brain diseases. And I would also like to take this opportunity to introduce you to my successor Professor David Nutt, a British neuropsychopharmacologist and psychiatrist who specialises in the research of drugs that affect the brain and conditions such as addiction, anxiety and sleep. I look forward to supporting him in his new role.

More information on YotB is available at www.yearofthebrain.com

Dear Colleagues

Mary Baker, MBE

The European Brain Council recognises the following organisations that supported the production and publication of this newsletter through Publication Support Agreements:

news3 interview: David Nutt, new President of the EBC

4 interoperability set to reshape the healthcare environment in Europe

5 Mental health is everybody’s business

6 report puts schizophrenia on the European Agenda

7 peter høngaard andersen appointed as new CEO of the EBC

13 david nutt receives John Maddox Prize

13 Survey shows nearly two-thirds of mental health patients wish to return to work but workplace attitudes need to change

28 Cheltenham festival promises engaging public debate

science & medicine25 glowBrain: A night of fluorescent brilliance

8 repLaCeS celebrates conclusion of landmark pan-European collaboration

22 Brain: the inside story

24 hearing loss linked to mental decline

interview & insight14 Looking forward to Year of the Brain in Europe

16 expert opinions in the ADHD debate

patients10 unlocking the language of music

12 adhd in plain sight

policy18 european regulations mean MS patients get the right drug

too late

20 electronic health records for clinical research

member organisations19 efnS joins enS to make ‘One strong neurological society’

26 Strength in numbers, Austrian Society of Neurology has record number of members

ContentSSpring 2014

2 EBCnews S P R I N G 2 0 1 4

EBCnewsThe Official Quarterly

Newsletter of the European Brain Council

how does the eBC go about bringing together the threads of european brain research?

The EBC is a collection of different kinds of organisations, which is our strength. We have groups who can talk to national patient groups, who can also talk to people who are in the European Commission who are interested in patient problems. Fur-thermore, we have industrial groups that can talk to the business sector and links with communications, and information technology for example. The professional body members are broadly penetrating in terms of the media- politically and apolitically.

With this membership we raise the discussion and profile of brain research, and so far, have been remarkably successful. We now have a new EBC board, a very talented board, and I am very much looking forward to working with them all.

how do you draw in the length and breadth of the eu, given the gaps in resources that some countries have relative to others?

We have looked at this quite care-fully. The preponderances of the EBC

members and committees are drawn from the big countries like the UK, Netherlands, Germany and France. One of the things we have been really successful in doing in the last decade of the EBC is helping countries with less of a track record to develop their own brain councils – 15 or 17 new

brain councils have been set up. Many countries have their own annual brain council or research meetings, and they are all very much publicly oriented. So we have a pretty broad spread in Europe now.

what are some of the eBC initia-tives and activities coming up?

Through its second decade, the EBC is doing routine but necessary things

like restructuring our statutes to make sure they fit our purpose in this new century, and also so that we are sleeker and more efficient and responsive in our decision-making. We are of course supporting the Year of the Brain as it starts to roll out later

this year. This is an excellent initiative to keep the impe-tus going for people to think about the needs and value of brain treatments and research. We are engaged in a number of European projects. We are helping to refine the vision and the targets for research in

Horizon 2020, and we will continue to lobby for the benefits for brain science to be kept at a proportionate level of funding, commensurate with the huge problems of brain disorders.

Of note, we are using some of the EBC links to try to get a sense of different views across Europe on neu-

roenhancement technologies such as deep brain stimulation, smart drugs, the use of human-computer inter-faces. This is an important visionary programme, because it is about trying to see if there are potentially unin-tended consequences of an unregu-lated research expansion that could end up causing significant problems. We want to define a way of viewing neuroenhancement, future-proofing the science against serious ethical challenges.

how is the eBC working to over-come the financial challenges facing brain disorders in the coming years?

We are very interested in improving the speed at which new medicines get to be tested and get to the market. We are conscious that the average time to get a drug to the market is 13 years for brain disorders; it is about five to six years in cancer. That has had a deleterious effect on compa-nies’ confidence to invest in brain disorders, because they see them as so much more expensive, they don’t necessarily seem to be as profitable once they have committed the huge time and resources to getting the drug on the market, and they don’t have any greater period of exclusivity than they do for a cancer drug. There has been a widespread exodus from brain research into cancer research, largely driven by that factor, and the fact that it is easier, not just faster, to find targets in cancer.

Certainly, we are very worried that we don’t have enough companies in the brain space at the moment, and in order to get them back in we have to make it very much easier for them to get compounds tested and to get regu-latory approval. That could mean a very big shake up to facilitate research and development of drugs. There are a number of different avenues we are looking down to reverse this downward spiral to start getting more investment and faster output. Every year a drug is delayed, that means that hundreds of thousands of patients with common disorders are being denied possible new treatments.

“We are engaged with a very interesting project on neuroenhancement... This is an important,

visionary programme, because it is about trying to see if there are potentially unintended consequences

of an unregulated research expansion that could end up causing significant problems.”

Interview david nuttThIs yEar sEEs ThE INauguraTION Of a NEw EBC BOard, wITh

prEsIdENT davId NuTT, rENOwNEd fOr hIs zEalOus ENgagEmENT wITh ThE gENEral puBlIC ON BraIN IssuEs. hE spOkE TO EBCNEws

aBOuT ThE rOlE Of ThE EBC IN kEEpINg BraIN dIsOrdErs aT ThE fOrEfrONT Of EurOpEaN CONsCIOusNEss.

interview and insight

S P R I N G 2 0 1 4 EBCnews 3

In November 2013, European Union (EU) member states adopted guidelines to make it possible to share basic health information across borders. These guidelines form part of a long-term initiative led by the eHealth Network, a group of representatives from all 28 EU countries, to cooperate on different aspects of eHealth, including interoperability.

Robert Madelin is Director-Gen-eral for Communications Net-works, Content and Technology at the European Commission

and he is leading the eHealth initiative with the Commission’s department for health and consumers. This is interoper-ability on a vast scale, and has taken five years to reach the final stage of the pilot project called epSOS (www.epsos.eu). Mr Madelin anticipates that it will take at least a further five years for all EU member states to be able to exchange health data on a large scale, and securely.

“We are beginning to make progress with member states about the definitions of how to get data transmitted – effectively the specifications of interoperability,” he said.

Eventually, clinicians will be able to ac-cess, read and transmit patient data from anywhere in Europe, regardless of the patient’s country of residence or where the data were created and originally held.

“This is exciting,” remarked Mr Madelin, who welcomes the advance it will bring to patients and clinicians alike. However, he is also very aware of how demanding a project of this scale can be. “There are two chal-lenges to the whole interoperability project: firstly it is difficult to accomplish techni-cally, but secondly it is difficult to have

member states want to do it,” he explained. “So the political momentum is needed.”

pilot projectThe European pilot project, epSOS, uniting 25 countries, including 22 Member States has been a success, and this is encouraging further roll out. The pilot scheme is trialing the technology between selected hospitals in Europe. “They worked together to agree the interoperability standards and contrac-tual relationships between hospitals regard-ing privacy of data, enabling the different hospitals to exchange data.”

In practice, this arrangement means that a doctor in Austria can access and read the data of a patient who lives in France, but who has fallen ill abroad, without having to take a detailed history during a patient consultation.

Interestingly, the technical challenges

interoperability set to reshape the healthcare environment in europe

what is interoperability and how will it benefit patients?Interoperability technically enables two health systems to exchange and understand data about a specific patient, even if the two sys-tems have clinicians who operate within different languages and legal frameworks. “In part, interoperability is getting two computers to talk to each other, but it is a lot more than that,” said mr madelin.

On a local level, within one health service, family practitioners and specialist clinicians are often segregated into silos with minimal communication. patients requiring complex care need the level of this communication to improve. Interoperability will provide an op-portunity for this. “This is a clear benefit for the patient and this will be available to every patient across Europe, every time they interact with the medical profession.”

secondly, people with chronic conditions will also benefit from interoperability because these patients require extensive care. “Inter-operability will provide the equivalent degree of professional support for fewer hours of a patient’s day, at lower cost to the system and in a way that enables a patient to improve compliance and stay out of hospital,” said mr madelin.

finally, mr madelin noted the benefits for patients with rare diseas-es or others who fall ill far from home: “Interoperability helps to use Europe as one geographical health area. for rare diseases, interoper-ability facilitates the creation of a far larger cohort of patients.”

robert madelin, director general for Communication Networks, Content and Technology at the EC

news


are less of an obstacle than the legal aspects of interoper-ability. Mr Madelin said: “For hospitals to communicate across borders is not techni-cally hard but there is still work to be done to have a safe legal framework to enable such exchange of data while complying to regulations. The pilot scheme is in place to make recommendations in order to fix this problem.”

Interoperability comprises more than just the technol-ogy per se. “We are asking health care providers to use their existing IT facilities and we are providing them the infrastructure and rules of cooperation to exchange data. It’s applying existing hardware the same technology, but we are working out how to do new things with it.”

Next, based on the suc-cess of the pilot scheme, Mr Madelin and his team intend to roll this out across the EU. “We have the technology, we’ve proven that it works. The next challenge is to help all member states to put this in place.”

Unfortunately the budget (just over €1 billion for all cross border services to be deployed, including eHealth services) is less than half that needed, but the initiative still hopes that every hospital will be connect-ed over the next 5 years.

Key events in 2014 include the launch of the Connect-ing Europe facility that will subsidise the roll-out of the required cross border infra-structure, as well as the launch of the innovation work under Horizon 2020.

mental health is everybody’s business

“This is a summit of the doers,” said the Executive Chair of WISH and Direc-

tor of Global Health Innovation at Imperial College London, Professor the Rt. Hon Lord Darzi of Denham. “These guys are so keen, so energised; they are going to take these ideas and translate them.”

The idea behind WISH is to create long-term strategies in research, policy and deliv-ery of healthcare that are globally relevant, evidence-based, lifelong and scalable. Panel discussion was led by ministers, business leaders and cutting-edge thinkers, who dis-

cussed the implementation of a scheme that addresses human rights violations in mental health, and one that must be both funded and monitored in an adequate way.

“People with mental health problems face discrimination in almost every aspect of their lives, and some of the worst human rights violations that we witness in contemporary society,” said Professor Vikram Patel of the London School of Hygiene and Tropical Medicine, UK, during the WISH mental health forum, which he co-chaired. “Even

The world summit for health (wIsh) was first held in 2012, with the hopes of quickening the pace of global health management in many areas including mental health. The second installment of this initiative by Qatar foundation took place last december in doha and was attended by over 500 leaders in the field of health from around the world.

lord ara darzi, Executive Chair of wIsh and director of global health Innovation at

Imperial College london.

Continued on page 6

news


report puts schizophrenia on the European agenda‘living with schizophrenia’ is the chosen theme for world mental health day 2014, a global event that will see widespread activity aimed at raising schizophrenia up the international policy agenda.

Across Europe, the US and beyond, healthcare professionals, patients and advocacy groups are calling for change: change

in the way that people with schizophrenia are identified, managed, supported and integrated into their communities and the work-place. But to bring about such change will require a united ap-proach and commitment by policy makers, peer groups, advocacy groups and the clinical community.

A report launched in November 2013 called Schizophrenia: Time to Commit to Policy Change and presented in Brussels registered interest in the field from the Euro-pean Parliament that has established special interest group on Mental Health, Well-being and Brain Disorders.

Speaking on behalf of the authors of the report, Professor Silvana Galderisi, from the Second University of Naples, Italy, presented six key recommendations for policy change. Aiming to foster a positive outlook and to promote the concept of ‘recovery’, the recom-mendations include provision of: an evidence-based, integrated care package for people with schizophrenia; support to enter and to remain in their communities; concrete support, information and education programmes for families and carers; support for research and development of new treatments for schizophrenia; and regular awareness-raising campaigns.

Co-chairing the meeting, Nessa Childers MEP and Jean Lambert MEP warmly welcomed the findings, which support the Joint Action on Mental Health and Well-Being by the European Commission.

Stepping beyond Europe, the expert recommendations of the report are also finding resonance in the US, where advocacy group NAMI (National Alliance on Mental Illness) is incorporating lessons from the report into its extensive programme of advocacy and awareness-raising activities – culminating in its 2014 conven-tion, which will this year take place in Washington DC.

The full policy report, short summaries, foreign language translations and news updates are available at: http://www.oxfordhealthpolicyforum.org/schizophrenia-time-to-commit-to-policy-change (Reproduced with permission from Oxford PharmaGenesis™ Ltd).

World Mental Health day is October 10, 2014

though we have robust evidence that a range of drug, psycho-logical and social interventions can transform lives, the vast majority of individuals around the world do not have access to these interventions.”

The WISH Mental Health Working Group Report, which emerged last year, outlines six recommended policy actions: empowering people with mental health problems and their families; building a diverse mental health workforce; develop-ing a collaborative and multidisciplinary team based approach to mental healthcare; using technology to improve access to mental healthcare; identifying and treat mental health problems early; and reducing premature mortality in people with mental health problems.

Also on the mental health forum panel was Dr. Shekhar Sax-ena, forum co-chair and Director of the Department of Mental Health and Substance Abuse at the World Health Organization (WHO), who noted that the very pragmatic Mental Health Working Group Report of 2013 forms a key step in the imple-mentation of the WHO’s Comprehensive Mental Health Action Plan 2013–2020. “On average, countries spend less than 3% of their health budget on mental health,” he said. “The WHO’s message is very clear: the investments that we make as people and as countries need to increase. And that will pay very good dividends.”

The 2013 world summit for health (wIsh) was held in doha with the hopes of quickening the pace of global health management in many areas including mental health.

Continued from page 5

news


peter andersen is the new CEO of the EBC

the eBC welcomes its new Ceo, dr. peter høngaard andersen, appointed on March 1, 2014. dr andersen wants to position eBC in a central role in increasing the awareness of brain diseases in society in europe.

The EBC has a new interim Chief Executive Officer (CEO) as of March 1 this year. Namely Dr. Peter Høngaard Andersen, former Execu-tive Vice President and Head of Research and

Corporate Patents and Trademarks at Lundbeck A/S, a pharmaceutical company focused on brain diseases.

Dr. Andersen’s background in Central Nervous Sys-tem (CNS) research and a personal history of friends and family who have experienced brain diseases make him an excellent choice for his new role.

His enthusiasm for researching brain diseases dates back 40 years when his then girlfriend’s father was diagnosed with Parkinson’s disease (PD). “This initiated my interest in brain disease,” he remarked. “I remember back then, I was still in High School, I travelled to the local university to get access to their library to find out more about the disease and as such my interest had been sparked in the field.”

In addition, Dr. Andersen has family experience of Alz-heimer’s disease that sadly affected his mother in the late 1990s. As such, he has developed a real appreciation of the emotional and social aspects that patients with brain dis-eases experience. In fact, it is this well-honed understand-ing and appreciation that has led to his new role with EBC.

In recent years, Dr. Andersen has shifted his focus from research to the promotion and awareness of the costs and social burden of brain diseases. “Most of the costs of these diseases are hidden, you could call them “follow-on costs”. They are not found directly within the

healthcare system,” he remarked. “I’ve spent time lobby-ing and alerting decision makers in society to take this se-riously, and in fact this was my direct link to EBC, which is a continuation of this work.”

“We really need to communicate more clearly what a burden these diseases put on care-givers and on society. This is not appreciated by most people unfortunately. Through EBC’s communications work we need also to pro-vide the right context from a standpoint of ‘no cure without research’ to consideration of the ‘follow-on costs.”’

By qualification, Dr. Andersen has academic degrees in chemistry, biochemistry and medicine. His role at Lund-beck enabled him to focus in on brain diseases exclusively, particularly depression, schizophrenia and addiction. “These are the three areas in which the company has had most success. They have recently launched a new anti-de-pressant, an anti-psychotic and a treatment for alcoholism, nalmefene, globally.”

Interestingly, nalmefene is breaking new ground in treat-ing alcoholism. It differs from previous therapies in that patients are not required to go ‘cold turkey’ but the drug regulates the brain’s desire for alcohol. “If we can lower this a little then we lower the need to drink alcohol. The clini-cal data bore this out and in the treated groups we found a consumption lowered by approximately 70–80%.”

In conclusion, asked what his key objectives were for EBC over coming months, Dr. Andersen said that he wanted to establish a strategy that clearly directs EBC’s course over coming years and position EBC in a central role in increasing the awareness of these diseases in society in Europe. He also wants to execute Year of the Brain as a means of initiating the strategy. “If I can accomplish this then I will feel that I have really made a difference.”

peter høngaard andersen appointed as new Ceo of the eBC

news


news


Interview page

The gathering in Paris at the Institut du Cerveau et de la Moelle Épinière (Brain and Spine Institute) celebrated the culmination of the four-year project.

REPLACES was funded by the Seventh Framework Pro-gramme of the European Commission. It received a total estimated amount of €4,219,766 for a duration of four years and involved eight European countries.

“This consortium epitomises the fact that research is not restricted to one country, but that everyone needs to collaborate to tackle the chal-lenges of Parkinson’s disease,” said Dr Etienne Hirsch, Director of the National Institute of Neurosciences, Cognitive Science, and Neurology, Paris, France,,leader of the French arm of the consortium. “Importantly, REPLACES served to provide a platform for three significant stakeholder parties to work together, namely patients, policy-makers and researchers.”

As past president and patron of the European Parkinson’s Disease Asso-ciation (EPDA), Dr Mary Baker gave a brief presentation on the challenges faced by society in tackling the disease. With respect to the many patients, patient representatives and lay public gathered for the public arm of the

conference, she said, “It’s wonderful to be back in a room with the people I love the most – the people living with Parkinson’s disease and their carers.”

There are approximately 1.2 million patients with Parkinson’s Disease (PD) in Europe. Sylvia, 72, is one such person who attended the REPLACES public meeting. She was particularly pleased to know that the various research groups were work-ing together as a whole rather than in isolation. “I’m so pleased that the REPLACES consortium has been a success with groups working across different countries. I was also pleased to hear speakers today discuss the whole person, not just the brain.”

She also came to the meeting to find out what opportunities existed for participation in clinical tri-

als. “Really, I am mainly interested in finding the cause rather than the remedy to Parkinson’s because of my age,” she said, adding that she will access trials through her national patient group – the French Parkinson’s disease society.

“This consortium epitomises the fact that research is not restricted to one country, but that everyone needs to collaborate to tackle the

challenges of Parkinson’s disease.” Dr Etienne Hirsch, Director of the National

Institute of Neurosciences, Cognitive science, and Neurology, Paris, France

rEplaCEs celebrates conclusion of landmark

pan-European collaboration

The public meeting of rEplaCEs that held its final meeting at the the Institut du Cerveau et de la moelle Épinière

aprIl saw ThE fINal mEETINg Of ThE paN-EurOpEaN rEplaCEs (rEsTOraTIvE plasTICITy aT COrTICOsTrIaTal ExCITaTOry syNapsEs) CONsOrTIum, a rEsEarCh

prOjECT ThaT fOCusEd ON ThE IdENTIfICaTION Of mOlECular aNd BIOlOgICal mEChaNIsms uNdErlyINg plasTICITy aNd rEpaIr IN parkINsON’s dIsEasE.

science & medicine


Scientific findingsHirsch explained the rationale of unmet medical need that drove the research agenda for the REPLACES consortium. “We particularly want to find a treatment for patients with gait and balance disorders, which are major issues in this disease,” he pointed out. “When a demented patient falls, it accelerates death by five or six years. We wanted to un-derstand the reasons for falls in patients with PD.”

Using functional magnetic resonance imaging (fMRI), Hirsch and his colleagues compared the brains of patients with PD to those of healthy patients. They found that a region near to the substantia nigra switches on when people are walking, and that neurons are lost in this region in PD patients who suffer falls. “Now we want to implant electrodes in this region to alleviate gait and balance disorders- electrodes are the only way to reach this region.”

plasticityMonica di Luca, professor of Pharmacology at the University of Milan, Italy, was the lead coordinator for the REPLACES project. She explained that the constant flux of ideas generated by the consortium arose from a vibrant network between scientists, clinicians, patient organisations and the APDA, which guided the project over the four years of its operation.

REPLACES focused on plasticity, which is the capability of neu-rones to adapt and respond to different stimuli from the environ-ment. Plasticity is found in all healthy human brains. In children in particular the brain is bombarded by many new stimuli, but their extreme plasticity means that their brain can adapt and respond.

It is this plasticity that becomes hampered in the striatum of patients with Parkinson’s, and REPLACES looked into this phenomenon. “Replaces studied the dopaminergic system, the neuronal connections in the striatum at molecular level and why these dopamine receptors are lost in the disease,” said Professor di Luca.

The study also looked at the connections made via both dopamine and glutamate. “The project has found that as the neurones lose the impact of dopamine, they change the molecular composition of the glutamate connection,” said Professor di Luca. “These changes could represent a target for future therapies.”

“This is a growing financial burden to governments. If they don’t react and

improve the situation for people with mental health

issues then they will have an enormous bill later on.”

John Bovis, Chair of Health First Europe and co-chair of the Alliance

for Personalised Medicine.

health promotion, illness prevention and investing in treatmentsalso speaking at the public gathering, john Bovis, OBE, chair of Health First Europe and co-chair of the alliance for personalised medicine stressed that there was a signifi-cant task in educating policy-makers in the importance of health research and in par-ticular neurological health research. Bovis is familiar with policy and policy-makers with his former position as uk minister of health and member of the European parliament.

“Neuroscience research is important and to be honest hasn’t competed very well with other areas like heart disease, cancer, diabetes, and respiratory disease, which pile on the pressure on politicians particularly if children are involved,” said Bovis. “we have to convey the message that, with an ageing population, and with a wide range of social impacts on people, neurodegenerative dis-eases are one of the fastest growing areas of health concern. we need a combination of health promotion, illness prevention and investing in treatments.”

mr Bovis echoed dr Baker’s earlier com-ments about the cost burden of brain dis-eases. “This is a growing financial burden to governments,” he said. ”If they don’t react and improve the situation for people with mental health issues then they will have an enormous bill later on.”

monica di luca, john Bovis and mary Baker at the final rEplaCEs meeting last april

science & medicine


unlocking the language of music

patients


Concert pianist and Year of the Brain Ambassador Olga Bobrovnikova’s musical prominence grows from strength to strength in spite of her continuing battle against the disease that threatens to take away her art. Since her diagnosis, she has dedicated herself to raising awareness about multiple sclerosis, and to researching the scientific basis of musical performance in relation to the brain systems of reward, emotion and language.

The roots of any story are held fast in childhood. Leafing through the introductory pages of Olga Bobrovnikova’s latest book, Playing the Pathways of My Brain, which tell of her musical schooling

ending at the Moscow Conservatoire (or, as she describes it, a “senseless musical straitjacket”), it is clear that her life has been coloured by an irrepressible sense of rebellion and the dogged spirit of enquiry. This inquisitiveness prompted her to define the nature of performance – her instinctive expressiveness that reaches between the notes and has moved audiences to tears. In an interview with EBCnews, she discussed her life’s work, and how she ap-plies her theoretical knowledge of music and the brain to her teaching of musical performance.

“Being a classical pianist first of all, the diagnosis of MS was like a life sentence to me,” began Ms. Bobrovniko-va. Her MS is of the relapse-remitting form, which means that she may experience bouts of immobility followed by

recovery, which naturally makes concert planning very difficult: “You can’t sign any contracts, you

can’t take any long term engagements, be-cause you don’t know how you will be in a

couple of months’ time. This disease also affects you in a physical way, primarily with very big fatigue, and then with all of the physical conditions like coordi-

nation and simple movements.”A complex and unpredictable condition, MS is an inflammato-

ry condition that erodes the fatty sheaths insulating

nerve fibres, which leads to disrupted neural communica-tion and manifests itself as a broad range of symptoms that include loss of sensation and motor functions.

Such uncertainty can take a great psychological toll, perhaps best exemplified by the life of Jacqueline du Pré, whose phenomenal career as a cellist was abruptly ended by an aggressive form of MS. While clearly identifying with du Pré, Ms. Bobrovnikova sees herself in a different light. “All of this uncertainty has repercussions on your emotional status, but by nature I am a very optimistic person. I don’t take a sad, black look of life, the yin; I prefer the yang. I always know that at the end of a storm there is a golden light. I honestly believe there is always something positive.”

Ms. Bobrovnikova’s research linking the rewards of playing music with the emotional reward that audiences feel, which she undertook with her partner Paul Moss-man, culminated in Playing the Pathways of My Brain. “My investigations started, and then the Year of the Brain appeared in 2012,” she said. “Paul Moss-man and I came up with some pretty interesting conclusions that were highly appreciated by the scientific community.”

The book has received scintillating praise from such eminent figures in the neu-rological community as Cyril Höschl, Director of the Prague Psychiatric Centre, who called it “really impressive”, and geneticist and author Blanka Schaumann, who said it pre-sents “an eye-opening approach to the understanding of the relationship between music and the brain...this is truly original and it will open new pathways.”

This research was prompted by both her intuitive performance style and her MS diagnosis, and suggests a method of psychological therapy that uses music to estab-lish an emotional dialogue. Now, she uses this knowledge as part of her teaching: “I am not only a note player, I am a storyteller. I always try to create the drama and meaning behind the notes. I already did this instinctively before. I had a sixth sense of how to approach kids and adults. But now I have completely changed my approach to educa-tion, and now I base it and focus it with strict scientific knowledge. I know how to focus kids and how to get the

“Music is a language as well as everything else. It accompanies us from

the mother’s womb to the grave; all our life we are

cradled in music.” Olga Bobrovnikova, concert pianist and Year of the Brain

Ambassador

Continued on page 12

patients


best out of each of them, and how to bring them to the reward which helps us to evoke our potential.

“Mostly you hear from youngsters that classical music is boring, that rap or techno is better. What is missing in musi-

cal education – and my last performance proved it with children going on to the stage after very few lessons, performing very simple music without scores – is pleasure and confidence. The main idea is that music is a language as well as eve-rything else. It accompanies us from the mother’s womb to the grave; all our life we are cradled in music.”

In the European Year of the Brain, Ms. Bobrovnikova is looking to highlight the notion that the social benefits of music are just as important as understanding the neurological basis of music. “Music has an absolutely essential part in the gathering of the great brains of the world,” she conclud-ed. “As a concert pianist with MS, I fear the degeneration of my capabilities. The Year of the Brain 2014 inspired me to inves-tigate the musical functions of my own brain by reviewing the body of scientific music and brain research. I discovered that music can explain the mechanisms of hu-man emotions, the brain’s reward system and even language itself. I seek to inspire students in schools and colleges to experi-ment with the attributes of the wondrous language of music”.

“I am not only a note player, I am a storyteller.

I always try to create the drama and meaning

behind the notes.” Olga Bobrovnikova

unlocking the language of musicContinued from page 11 last April saw the presentation of

an expert white paper, ‘ADHD: Making the invisible visible’ to policy makers and key stakehold-

ers with a role in mental health care.Funded by Shire AG and supported

by both the European Brain Council and GAMIAN (Global Alliance of Mental Illness and Advocacy Network), the paper features recommendations on helping to ensure better recognition and treatment of Attention Deficit Hyperactivity Disorder (ADHD) in healthcare, schools, the crimi-nal justice system, and the workplace.

Speaking at the launch event in Brus-sels, Dr Mary Baker, at the time, President of the EBC, commented: “This expert white paper provides clear evidence that ADHD can have a marked impact on self-esteem, social functioning and academic outcomes.”

“It also shows that timely and effective management can improve quality of life and, with appropriate support, there is potential for people with ADHD to lead fulfilled and successful lives. We want to give everyone with ADHD this opportu-nity,” she added.

The white paper was co-authored by Dr Susan Young, Clinical Senior Lecturer in Forensic Clinical Psychology at King’s College London, Michael Fitzgerald, Pro-fessor of Child and Adolescent Psychiatry at Trinity College Dublin and Maarten J

Postma, Professor in Pharmacoeconom-ics at the University of Groningen in the Netherlands.

In preparing the paper, the authors chaired a European expert roundtable dis-cussion with a multidisciplinary team com-prising ADHD patient advocacy groups, clinicians and representatives from the education and criminal justice system. The group agreed five key recommendations for policy makers and stakeholders (see box).

Kate Carr-Fanning, Vice Chairperson of Hyperactivity Attention Deficit Disor-der (HADD) Ireland, participated in the roundtable discussion and spoke at the launch as someone who lives with ADHD.

“ADHD is a hugely treatable condi-tion, a hugely manageable condition. But people do not understand ADHD,” she explained. “So why is ADHD invis-ible? Because we lack knowledge, we lack recognition and we lack acceptance... You cannot solve the problem unless you realise that it is there.”

‘ADHD: Making the invisible visible’ highlights the impact of ADHD, not only on those who have it, but on parents and carers too. It also emphasises the wide-ranging and long-term consequences of the condition.

“That is really the strength of the white paper,” said Kate Carr Fanning. It brings together how this condition is affecting all of us, directly or indirectly.”

She concluded: “We all have a little piece of the solution. It is only by working together, that we can actually create a bet-ter and more inclusive society.”

For more detail and access to the full re-port visit http://www.europeanbraincouncil.org/

adhd in plain sight

five recommendations in adhd: Making the invisible visibleThe Expert white paper details five practical steps to help limit the impact of adhd on individu-als and society:n Increase informed awareness

of adhdn Improve access to early and

accurate diagnosis of adhdn Improve access to adhd

treatment, care and supportn Involve and support patient

organisationsn Encourage a patient-centred

research agenda on adhdfor more detail and access to the full report visit http://www. europeanbraincouncil.org/

adhd by numbersn 1 in 20 children and adoles-

cents are affected by adhdn 50% of children with adhd

will continue to be affected as adults

n almost 50% of children have up to 3 co-morbidities at the time of adhd diagnosis

n annual healthcare costs per adhd patient range from €716 to €2134

science & medicinepatients


R esults of the GAMIAN (Global Al-liance of Mental Illness Advocacy

Networks) survey on mental health in the workplace show that 62% of patients are unhappy to be out of work and want to return. One-third fear stigma and around 80% believe a change in attitude toward mental health problems was needed in the workplace.

Patients call for a greater number of more effective programmes to help them to both find and keep a job, according to the survey, Mental Health in the Work-place: needs of patients and challenges for employers.

GAMIAN-Europe is a patient-driven, pan-European organisation that represents the interests of people affected by men-tal illness and advocates for their rights.

Since 2006, the organisation has conducted an annual survey into carefully-chosen patient-centric aspects of mental health.

“Surveys generate a lot of valuable infor-mation sourced from healthcare profes-sionals and psychiatrists, but we believe it is vital to add the view of patients to this growing body of information,” said Mr Paul Arteel, Executive Director of GAMIAN.

The most recent survey was presented at the GAMIAN annual conference in Sep-tember 2013. The survey consisted of 572 responses from patients across 20 European countries. These patients had mental health issues including schizophrenia, bipolar and unipolar depression, and about 50% were

in full-time work while 25% were in part-time work.

Key quantitative results n 60% said their symptoms made it impos-

sible to go back to work.n 50% said they were afraid of having a

relapse if they returned to their former job.

n 64% said not being able to work was a more or less permanent situation.

n 62% were unhappy with this situation and would like to get back to work.

n 32% did not tell their employer about their mental illness, for fear of misun-derstanding and discrimination.

n 80% believed that better training for staff working in human resources and effective support from a medical profes-sional would have helped them to keep their work.

n 77% thought that a change in attitude of management was needed.

n 84% thought that a change in attitude of their colleagues would have been very helpful to them.

n 80% said they needed more support from their families and thought a change in attitude would have been helpful.

The John Maddox prize is a joint initiative between

the science journal Nature, the Kohn Foundation, and the charity Sense About Science, and is granted in recognition of an individual who stands up for science as Sir John Maddox did.

During his 22-year tenure as editor of the prestigious sci-ence journal, Sir John Maddox changed attitudes and percep-tions, engaging with difficult debates and inspiring others to do the same.

Professor Nutt is an accom-plished British psychiatrist and neuropsychopharmacologist specialising in the research on drugs that affect the brain and

conditions such as addiction, anxiety and sleep. He headed the psychopharmacology unit at the University of Bristol until 2009, at which point he took up his current role at Imperial Col-lege London. Over many years, Professor Nutt has shown cour-age in promoting science and evidence as a matter of public interest, despite facing difficulty and hostility in doing so.

He was named chairman of the UK Government’s Advisory Council on the Misuse of Drugs (ACMD) in May 2008. His role was to make scientific recom-mendations to government ministers on the classification of illegal drugs based on the

harm they can cause. In 2009, Professor Nutt was dismissed from his role at the ACMD by the then Home Secretary, Alan Johnson, after speaking out about the Government’s policies on drugs being at odds with the evidence. Concerns among the scientific community following Professor Nutt’s dismissal led to the creation of the Principles for the Treatment of Independ-ent Scientific Advice, which are now part of the Ministerial Code.“Science is arguably the

defining characteristic of hu-manity. It therefore is impera-tive that scientists play their full role in all aspects of human life,” observed Professor Nutt. “Being awarded this prize gives me the confidence to continue to do what’s right, and hopefully will inspire others to follow suit.”

Commenting on the award, Sir Paul Nurse, President of the Royal Society, said, “In our complex times, society faces big challenges and there is a need for sound science to guide us, yet too often in practice science is relegated, ignored and even maligned during policy advice.”

In recognising the efforts of scientists to speak out on issues that matter to society, and bringing evidence into the limelight and battling to keep it there, Sir Paul Nurse added that David Nutt, “is a bold sci-entist who will inspire others to keep evidence at the centre of public and policy debates about science.”

david Nutt receives john maddox prizeprofessor david Nutt, Edmond j safra professor of Neuropsychopharmacology at Imperial College london, was the winner of the 2013 john maddox prize for standing up for science.

survey shows nearly two-thirds of mental health patients wish to return to work but workplace attitudes need to change

paul arteel

news


Part public awareness campaign, part call for policy improvements and greater funding, Year of the Brain (YotB) is designed to highlight the needs of the

millions of Europeans currently affected by brain disease.

Susanne Aalborg, Project Director for YotB, is drafting the strategy and carrying out the organisation that lies behind the campaign. EBCnews caught up with her to find out what is in the pipeline for this exciting campaign.

“We have three pillars which are the foundation of the Year of the Brain,” she ex-plained. “Educating society, which is about creating awareness of brain diseases, and teaching people how to keep your brain healthy.”

“The second pillar is about improved care and treatment access for those affected by brain disease. Here we look at ensuring patients get adequate treatment and that they get it as fast as possible.”

“Finally, the third pillar is to increase investment in brain related research and development. This in-cludes investing in the future, so that future patients can get better treat-ment,” she added.

The campaign, while dubbed ‘Year of the Brain’, could be more accurately

called ‘Years of the Brain’ as it is likely to extend well into 2015 and beyond, said Ms Aalborg. Planning initially started with a meeting in December to draft a framework for the project, she explained.

“We’ve set down an advisory board to discuss how to reach these objec-tives, consisting of representatives from the EBC members, from each scientific society, the patient organisa-tions, and indus-try.”

looking forward to year of the

Brain in EuropeThe year 2014 is no ordinary year for the EBC: with the support of over 200 patients, clinical and industry organisations, the EBC will launch their Year of the Brain

susanne aalborg, project director for

year of the Brain

news feature


ConnectivityThe advisory board will meet regularly to define the scope and activities that YotB will be involved in. The key strat-egy behind ‘Year of the Brain’ is to bring together European stakeholders from multiple specialties – including neurol-ogy, psychiatry, neuroscience, neurosur-gery and neuropsychopharmacology, as well as patient groups representing those living with neurological or mental illness, she added.

“Our buzzword for Year of the Brain is ‘connectivity’. We see it as our main role to put people together to make magic happen. We will look, country by country, to see who is present there and connect the dots between them,” she explained.

“The way EBC is built is by having the patients, the scientific societies and industry working together and speaking with one voice”

Year of the Brain eventsThe events are planned to kick off during the Italian presidency of the European Union (EU), which begins in July 2014.

February already saw YotB holding a stand at the Barcelona-based BRAI.NS 2014 conference, and YotB will also be promoted at the EU Chronic Diseases Summit in Brussels in April via an event on stroke. Other YotB events will be

held at brain related conferences around the world including Bulgaria, Germany, Serbia, Italy and Azerbaijan to name a few. A full calendar will be available on the YotB website which will launch very soon at www.yearofthebrain.com.

For Ms Aalborg, YotB holds a huge amount of potential, not least because of the unique space the EBC holds. “With YotB, we form the link between sev-eral parties within the brain space. This enables us to create synergies between the stakeholders within the field of brain disorders.”

This strategy enables YotB to best real-ise its core purpose of creating awareness around brain disorders and how to create a difference for society and patients, she added.

Many of the aims of YotB will be achieved through EBC’s efforts to engage politicians, both at national and Euro-pean level to facilitate and help fund work within the field of brain diseases.

Mary Baker, president of YotBMuch of the interest can be attributed to the groundwork done by Dr. Mary Baker, former president of the EBC, who is now lending her to time to the project as President of the YotB. A key aspect of this work includes building up a panel of YotB ambassadors – high profile individuals with the ability to put the YotB on the agenda, be it in press or in policy.

“[The ambassadors] will promote Year of the Brain, talk about what the key messages are and get the attention of the society, via the media, but also to simply advocate for more awareness and funding for the brain disorders. They’ll talk about how brain disorders impact society and how much cost is involved,” explained Ms. Aalborg.

“The ambassadors in the UK are scien-tists, celebrities, a lot of very key decision makers. Now we need to widen the net of ambassadors to other countries.”

So while 2014 is shaping up to be criti-cal time for spreading the messages that the YotB supports, it’s the connections that it fosters that could offer the greatest value. “I think the most important thing is that people from different silos start to work together. That’s what we hope to be able to pave the way for.”

going it alone: Professor David Nutt discusses Year of the Brainprofessor david Nutt is the new president of EBC. we spoke to him about the coming plans for the year of the Brain (yotB), and how the EBC decided to go ahead with the project with the help of the European Commission. This is what he had to say.

EBCnews: What makes now the right time for Year of the Brain?

There is no Euro-pean year of anything this year. This is despite

nearly all European Com-missioners in 2013 sup-porting the EBC year of the Brain proposal.

EBC has decided to go it alone to fill the void produced by the reluctance of the Eu to deliver its own year, and because we know that this is the time to spread the word about the chal-lenge and potential suc-cesses of such a year.

What do you hope can be achieved with Year of the Brain?

a raising of the profile of brain disorders and brain research – a cel-ebration of the vital role of the brain in human life. as well as offering guidance on how we can protect it from harm and heal it when it goes wrong.

How will Year of The Brain achieve its goals?

National and interna-tional conferences and meetings – with patients and families involved along with doctors and other practitioners. us-ing the new network of national brain councils that the EBC has helped set up across Europe to engage national experts

and local organisers for meetings, as well as ar-ranging Tv and radio talks.

Are there any areas that deserve special attention from Year of the Brain?

yes. we are planning to focus on some under-studied and under treat-ed disorders, for example stroke and addiction, which cause great hard-ship and suffering yet are rather ‘Cinderella’ topics in terms of research and treatment innovation, and often are not much talked about in the public arena.

news feature


Of growing concern is the increasing rate of diag-nosis of attention deficit-hyperactivity disorder (ADHD) and its treatment with methypheni-date. Reflecting the public unease with the situ-

ation, a debate was held at the EPA Congress to determine the realities and priorities of ADHD therapy today.

ADHD expert Beate Herpertz-Dahlmann, Director and Chair of the Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy at the RWTH Aachen University, took part in the debate, and she explained her perspectives on the matter to EBCnews.

Could you begin by explaining your view on medication?I am actually not against medication in children with ADHD. I think there are several severe cases that really need medication, that otherwise would not succeed in school or everyday life. However, I’m concerned that the numbers of patients who have been diagnosed with ADHD – and even more those who receive medication – have increased alarmingly. In my opinion, there is really no explanation for why so many more children should have ADHD than, for example, ten years ago. Today, mild to medium cases of ADHD get medication, when I think society should have other means to integrate these children.

Methylphenidate has indeed been shown to be effective in targeting key brain areas involved in adhd. what would you propose to distinguish between those individuals that really benefit from the use of this medication and those who could undergo therapy by other means?

I think the key criterion here is the severity. If I have a child that is intelligent enough, but who has severe problems with attention and extreme problems at school, I would give this child methylphenidate if the attention disorder was severe

enough. However, in my clinic, we look at the school and the IQ of children, and we have found that a lot of children with

rather low IQ attend too demanding schools. I also see parents who give their children medication as a form of neuro-enhancement to improve their academic achievement. I don’t agree with this.

In Germany, and I think this is a problem in other countries too, the

school day is so long – 8am to 4pm – that for a child with even a mild form of ADHD, this is very difficult to handle. That is where I think we should find other solutions to medi-cation alone. We could help these children by either changing their school to one that is less demanding; or by changing the school day with longer recreational phases, or giving some children the opportunity to go to school for one year longer than the rest. We only look at medication, but we need to look at other solutions too.

The next European Congress of Psychiatry will be taking

place in March 2015 in Vienna, Austria. Details can be found at

www.epa-congress.org

The European Psychiatric Association’s (EPA) 22nd European Congress of Psychiatry, a meeting of the keenest minds in psychiatric research and practice, took place in early March this year with the aim of promoting psychiatry and improving mental health across the globe.

“We only look at medication, but we need to look at other

solutions too.”Beate Herpertz-Dahlmann

Expert opinions in the ADHD debate

Beate herpertz-dahlmann



European regulations and payer policies relating to the use of therapies for multiple

sclerosis (MS) require revision to enable clinicians to prescribe the optimum treatment in a timely way to benefit patients over the long-term.

Arguably, regulators and payers in Europe place too much emphasis on cost effec-tiveness and too little on clinical need, said Gavin Giovannoni, Professor of Neurology at the Blizard Institute, Barts and The London, in an interview with EBCnews.

“Unfortunately, access to the most effective therapies is delayed through licensing and reimbursement so patients only get the drugs they really need too late, only after they fail first-line therapies,” he remarked. “By the time they can access more effective therapies, patients have already acquired a lot of damage, which is irreversible.”

Effectively, neurologists want to ‘invert the pyramid’, which amounts to treating more aggressively, earlier in the disease course. “We need a paradigm shift in thinking by the regulatory and payer authorities,” said Professor Giovannoni. “Neurologists welcome this, but we find our prescribing restricted by exist-ing licences and the confines of payer policies that forbid first-line use of these powerful and more effective drugs.”

“We want to enable use of the most active therapies first-line,” he highlighted.

Currently, progression from one drug class to the next relies on assessment of clinical

symptoms, and guide-lines do not permit monitoring of lesions by Magnetic Resonance Imaging (MRI). Under current guidelines, a newly diagnosed patient presenting clinical symptoms and requir-ing treatment would typically commence injection therapies with the disease-modifying agents – either inter-feron beta or glatiramer acetate, or possibly a new drug known as teriflumonide.

“According to current regulations, a patient needs to fail badly on one of the first-line agents to access the next tier,” explained Profes-sor Giovannoni.

The majority of pa-tients fail these first-line therapies but monitor-ing has to be conducted over 18-24 months

before accurate clinical assess-ment can be made. “This is a long time in the life of someone with MS.”

“MS is like an iceberg,”

continued Professor Giovan-noni. “For every clinical attack there are many more lesions that come and go that can only be seen on MRI scan, and MRI scanning is not universal at the

moment.”In the UK and vari-

ous other European countries, failure on first-line treatment needs to be assessed symptomatically; MRI monitoring that is indicative of progres-sion is not considered admissible.

“I think there should be recogni-tion that MS damage occurs early on at the subclinical level and we need to be treating more aggressively,” remarked Professor Giovannoni. “Patients might often experi-ence subtle cognitive problems which they don’t always pick up, but these do actually impact on daily func-tioning.”

Upon failure of interferon beta, a patient might progress to fingolimod, or if

worsening continues then the patient might be eligible for the most effective drug cur-rently available called natalizumab.

The response rate with natalizumab is far better than first-line treatments and the majority of patients will respond. “We want these more ef-fective therapies used

earlier because patients who acquire damage on first-line drugs never actually catch up because once it’s happened it is irreversible.”

European regulations mean MS patients get the right drug too late

“It’s short-sighted. They ask ‘how much will it cost this year?’ Even though a drug might

cost more and keep someone at work and help preserve future health, this is not of concern to

payers. It needs to change.”Gavin Giovannoni, Professor of Neurology at the Blizard

Institute, Barts and The London.

gavin giovannoni

science & medicinepolicy


payers consider cost effectiveness in preference to clinical need.Cost effectiveness remains the bottom line for payers, but unfortunately assessments only consider the short term and do not factor in the societal costs of MS patients and their partners and/or carers such as being un-able to work.

The average age of onset for MS is 30 years and within a decade, half of these patients are unemployed, according to Euro-pean figures. Most importantly, MS is a disease of the young who potentially have long productive lives ahead of them. Sadly, this is not taken into account by health technology assessment agencies.

“It’s short-sighted. They ask ‘how much will it cost this year?’ Even though a drug might cost more and keep someone at work and help preserve future health, this is not of concern to pay-ers. It needs to change,” stresses Professor Giovannoni.

In the US, by comparison to Europe, drugs for MS are not labeled as first or second line but for relapsing MS and the clini-cian and patient decide which drug to use and when. It is more effective and speaks to the clini-cal need of the patient.

Many clinicians in Europe would welcome a move by European payers and regulatory authorities to reflect those of their colleagues in the US. “We would like regulators and payers to move away from the tiered approach to therapy access and allow choice, so that as clinicians we can at least offer people early on a choice of highly effective therapy.”

The merger, taking place in Istanbul this year during their joint congress beginning in late May, will see the founding of the European Academy of Neurology (EAN). “In our view,

the most important thing is that we have one strong neurological society,” said Professor Jacques de Reuck, Professor of Medicine and Chairman of the PET Centre UZ/ RUG at the Department of Neurology, Ghent Uni-versity Hospital, Belgium, EFNS past-president and joint chair of the congress scientific programme committee.

The congress serves as an update on the latest knowl-edge and therapeutics in neurology, covering topics such as dementia, stroke, epilepsy, multiple sclerosis, headache, movement and neuromuscular disorders. “There will also be focussed workshops,” said Profes-sor de Reuck, “which are more specialised in particular aspects of particular diseases. There will be the opportu-nity for young neurologists to present their work. There is also a teaching programme, so that neurologists can be updated about new aspects, new treatments and new diagnostic methods that we can use in different neuro-logical diseases.”

There will also be a main session dedicated to those receiving care courtesy of the patient association, as well as a presentation by the European Union (EU) on the effective submission of research proposals.

The congress will also showcase some of the applications of the latest cutting-edge tech-nologies and therapeutics that will be coming into broader clinical use in the near future. Advancements in various MRI techniques allow for more detailed brain images of both anatomy and neural activation, and novel treatments may address hard-to-treat elements of certain disorders.

“There are particularly new neuroimaging tech-niques, which better map the functions of the brain,” said Professor de Reuck. “We now have more and more func-tional MRI, and we also have tractography, which allows us to see more precisely which part of the brain is not work-ing well and which neuronal tracts are affected, and I think this is a very important thing. Then there are also new therapeutic aspects that will be elaborated upon, particularly in multiple sclerosis, which will be very important for patients.”

The congress will also showcase some of the applications of the

latest cutting-edge technologies and therapeutics that will be coming into

broader clinical use in the near future. Professor Jacques de Reuck

Professor Jacques de Reuck, Professor of Medicine and Chairman

of the PET Centre UZ/ RUG at the Department of Neurology, Ghent

University Hospital, Belgium, EFNS past-president and joint chair of

the congress scientific programme committee.

EfNs joins ENs to make ‘One strong neurological society’The merging of the European Federation of Neurological Societies (EFNS) and European Neurological Society (ENS) brings the hope of a more unified and efficient organisation, better recognised in education and research both internationally and by the EU.

member organisations | ENS and EFNS


The discovery and development of new medicines that are effective and safe for routine use in pa-tients have become increasingly

complex, labour intensive and challenging. This is, in part, due to the need to conduct larger scale clinical trials that provide definitive evidence of clinical benefits and safety. Specific issues that frequently delay clinical trials and increase costs include: n the optimisation of clinical trial protocol

design; n the identification of suitable patients to

invite to participate; n the duplicate, manual re-entry of infor-

mation into a trials system that is already held within the patient’s health record;

n the reliability of data sources for clinical trials; and

n the difficulty in detecting and reporting infrequent adverse events.

In parallel, unmet medical needs, ageing populations, the trend towards personalised medicines, and the escalation in health care expenditures, are building unprecedented organisational and economic pressures on

health care systems and on the pharmaceu-tical industry. The average cost of clinical trials has increased threefold over the last 12 years. According to 2006 figures, the cost of researching, developing and achieving regulatory approval for a new chemical or biological entity was estimated at € 1.1 bil-lion. These issues may delay the availability of innovative medicines for routine medical prescription, and may increase their cost.

Recent developments of EHRs provide the opportunity to re-use patient-spe-cific data for clinical research purposes,

dipak kalra Clinical professor of health Informatics, director, Centre for health Informatics and multiprofessional Education, university College london

andreas Schmidt senior healthcare data scientist, product development at f. hoffmann-la roche ltd. switzerland

rECENT dEvElOpmENTs

IN ElECTrONIC hEalTh

rECOrds (Ehrs) prOvIdE ThE

OppOrTuNITy TO rE-usE paTIENT

lEvEl daTa fOr ClINICal

rEsEarCh purpOsEs, INCludINg

ThE assEssmENT Of ThE safETy

aNd EffICaCy Of pOTENTIal NEw

mEdICINEs, IN full COmplIaNCE

wITh EurOpEaN rEgulaTIONs

aNd pOlICIEs suCh as paTIENT

daTa prIvaCy.

Electronic health records for

clinical research (Ehr4Cr)

how Ehrs support the development of innovative medicines



including the assessment of the safety and efficacy of potential new medicines. Given the considerable progress that has been made towards seamlessly integrat-ing EHRs within existing health care networks, this offers exciting possibili-ties to researchers from the private and academic sectors to conduct research more efficiently, to address significant unmet medical needs more expediently, to improve patient safety, and to provide faster access to innovative medicines to optimise health outcomes.

“We’re sometimes pushing hospital boundaries because we’re offering methods that are beyond their current comfort zone. We have to recognise that different countries in Europe, different individuals

[within organisations] even, sometimes will have different views about what their comfort points are, and ensure that our privacy protection

approach and security standards will meet their most stringent requirements and expectations.”

Dipak Kalra,

“There is definitely an increased international interest in the

potential for reusing healthcare data. Reusing routinely

collected electronic hospital patient health records for

clinical research purposes is not only an attractive opportunity

to health researchers and others monitoring the health

of populations, academic research and the pharmaceutical

industry, but also to the engineering sector developing the next generation medical

devices.” Andreas Schmidt

ehr4CrThe Ehr4Cr project is developing a pan-European best-practice approach to reusing Ehrs for clinical research. The project runs over 4 years (2011-2015) with a budget of +€16 million and involves 34 academic and 10 pharmaceutical com-pany partners. It is to date one of the largest European public-private partnerships. This project aims at providing adaptable, re-usable and scalable tools and services for re-using data from Ehr systems for clinical research purposes. The consor-tium also includes 11 hospital sites in france, germany, poland, switzerland, and the uk. The project is designing the systems to work with data that have been de-identified. It is working closely with data protection and legal experts in each country to ensure that patient privacy is protected at all times.

The overall aim of the Ehr4Cr project is to streamline current clinical research processes in a scalable way, attract further research and development investments, and accelerate access to innovative medicines in Europe.

It also aims to improve efficiency and reduce costs of con-ducting clinical trials, through leveraging routinely collected clinical data at key points in the trial design and execution life-cycle. The project will design and demonstrate a scalable, widely acceptable and cost-effective approach to interoper-ability between Ehr systems and clinical research (Cr) sys-tems. a scalable approach will be achieved by working across different major disease areas (e.g. cardiovascular) and clinical research scenarios (e.g. patient recruitment), with varying local and national stakeholders and across several countries under various legal frameworks.

from a patient perspective, the Ehr4Cr project is an im-portant lever towards innovative medicines and a vehicle for re-using Ehrs to support medical research. This will ultimately lead to a more holistic healthcare approach through a closer co-ordination between care providers and patients, resulting in safer and more evidence-based diagnosis and treatment.

Ehr4Cr has made great progress during its first three years, and is now in the process of establishing organisations that will scale up and support these services in the long term.



Brain: the inside Story

The brain is the least understood organ of the human body. This relative lack of fundamental knowledge and understanding of how the healthy brain works means that effective interventions for brain diseases

are few and far between, and measures that slow functional decline are rarely followed. Experts say there is a need for a wider understanding of the brain amongst the general public from school child to pensioner.

Brain: The Inside Story is an exhibition aimed at this audience. It caused a stir in New York in 2013 where over 400,000 visitors participated in the puzzles, brain scans, and walk-through installations that comprise the exhibition, the biggest of its kind ever.

Professor Monica di Luca, Professor of Pharmacology at the University of Milan, Italy, and Vice President of the

EBC, explained that fundamentally, more research into understanding the physiology and functioning of the brain in a healthy state is needed before mechanisms related to the diseased brain can be elucidated and therapies developed.

“The exhibition explores the spectacular functioning of the healthy brain, how the brain develops, how it experiences sensations, feelings and emotions, and how it learns. It’s not just disease, but the exceptional functioning that makes up a healthy human being,” she said.

Importantly, Professor di Luca wants to break through the misperceptions imposed by stigma and elitism often as-sociated with the brain. “We want to attract the attention of everyone to this marvellous organ of the body. Sadly, there’s an impression that we cannot understand it or that it is only linked to horrible diseases such as depression, and dementia.”

Brain: The Inside Story is a traveling exhibition currently in Milan, Italy. Its exploration of the workings of the human brain in healthy and disease states has won it the ECNP Media Award for creating awareness of brain disorders and making the underlying scientific concepts accessible to the general public.

science & medicine


In terms of benefiting public health, Professor di Luca wants people to realise that improved understanding of how the brain works will ultimately lead to improved protection and prevention of decline in brain functioning.

At the exhibition, visitors will initially encounter a 1.4Kg preserved brain, a rather modest-looking white mass, after which they step into the exhibition through a tunnel of firing neurons – an installation created by the Spanish artist Daniel Canogar, who used lines of light projected onto hanging recy-cled wires to represent the brain’s connectivity and to highlight its electrical impulses.

Vivid images of brain scans, brain-teaser games and inter-active exhibits will take the visitor on a journey through the brain’s inner workings. Amongst the installations there will be a dramatic 1.8 metre tall homunculus, a human figure with abnormal proportions highlighting how much of the brain is devoted to the sense of touch in different parts of the body; a multimedia video piece with a clear resin brain that lights-up the functional areas used by a dancer as she moves; and a glowing 2.4 metre tall model of the subcortical brain (the region that includes evolutionarily ‘older’ parts, like the brain stem and cerebellum) illustrating how the brain processes language, memory, and decision-making.

Younger children will have opportunity to play a ‘shopping game’ in which a display will tell them if the food they choose to place in their shopping basket is nutritious for their brain or effectively junk food. “We want to look at the Mediterranean diet and why it is so good for our bodies and brains. The exhi-bition will discuss how it might improve ageing and memory,” explained Professor di Luca.

She added that the more we learn about the human brain, the more we will have the ability to change it. “Knowing how our brains work will give us exciting and sometimes unsettling new choices. We could repair our brains if things go wrong. We could even improve our brains, if we so chose.”

Brain: The Inside Story is showcasing in the Museum of Natural History in Milan, Italy, from October 17, 2013 till April 13, 2014.

eCnp Media award given to travelling exhibitlaunched last year, the ECNp media award was established to recognise exemplary contributions in any medium for creating awareness of brain disorders and making the underlying scientific concepts accessible to the general public. This year the award was presented to monica di luca, professor of pharmacology at the university of milan and vice president of the EBC, for the travelling exhibit entitled Brain: The Inside story. The exhibit was organised collaboratively by the american museum of Natural history (usa), with Codice, Idee per la Cultura and Comune di milano in Italy; guangdong science Center in guangzhou, China; and parque de las Ciencias in granada, spain. alongside the honour itself, the award also features a €5,000 prize.

Introducing the award was joseph zohar, who at the time was ECNp president, who said: “last year, we started the ECNp media award in order to open up a channel to the public. The idea of this media award is to highlight those who con-tribute to destigmatising disorders of the brain in any type of medium within Europe. This is our mission as a college, and I am very pleased to announce it for the second time. This is an ex-hibition that took place in spain and now it is in milan. more than half a million visitors have been to see this exhibition.”

accepting the media award on behalf of professor di luca was daniela Tardito, also from the university of milan. reading a message from professor di luca, she said: “we are very proud that this great brain exhibit is here in milan. The exhibit brings the latest neuroscientific research, highlighting the brain’s amazing ability to rewire itself in response to experience, disability or disease states; showcasing new technology that we scientists use to study the brain; and also features interactives, puzzles, brain imaging and some spectacular models in the largest brain exhibit we have ever had in Italy.”

“The award honours not only me as the pre-senter but all the people that have been involved in such as enterprise for more than 18 months since now,” she emphasised.

science & medicine


A recent study by Dr Frank Lin, an assistant professor at the

John Hopkins University School of Medicine and the university’s Bloomberg School of Public Health, Baltimore, US, found an independent relationship between hearing loss and mental decline in older adults.

The trial, reported in JAMA Internal Medicine, demonstrated that participants with hearing loss showed a decline in cognitive ability that was 30 to 40% faster than those whose hearing was normal.

The research showed that the reduction in brain function, meas-ured by repeated cognition tests over six years in nearly 2,000 elderly volunteers, was directly related to the amount of hearing loss experienced.

In the press release announcing his findings, Dr Lin explained: “Our results show that hearing loss should not be considered an inconsequential part of ageing, because it may come with some serious long-term conse-quences to healthy brain functioning.”

One potential explanation for the results is the link between social isolation and hearing loss. In his paper, Dr Lin notes that loneliness has already been established as a risk factor in cognitive decline. A reduc-tion in hearing may also lead to the brain expending additional energies on processing sound, at the expense of other activities. There is also the possibility that there is an underlying cause leading to both hearing loss and cognitive decline, he commented.

Dr Lin added: “Our findings emphasise just how important it is for physicians to discuss hearing with their patients and to be proactive in addressing any hearing declines over time.”

Hearing loss is a common prob-lem, affecting some 50% of people

aged over 70 according to some estimates. But while the immediate problems it brings are easy to under-stand, the effect hearing loss can have on the brain are less well known.

Soeren Hougaard is secretary General for the European Hearing Instrument Manufacturers Associa-tion (EHIMA).

“We listen with our ears, but we actually hear with our brains,” said Mr Hougaard. “That’s where the signal is actually transferred into understand-ing. And so once you have trouble with your hearing, it affects the brain, that affects how you interpret things and under-stand things.”

The not-for-profit trade organisation, which is affiliated with the six largest hearing aid manufacturers in the world, aims to promote pub-lic and professional awareness about hearing loss, its prevalence and the consequences it can have.

“My main message is we should break down the silo of thinking between geriatricians, family doctors, ENT doc-tors

and hearing aid specialists,” said Mr Hougaard.

“Each seems to be a great special-ist in their own silo, but there are so many aspects which mean that some of these problems are interlinked, and of course many of these problems meet in the brain,” he concluded.

hearing loss linked to mental declineEldErly adulTs wITh hEarINg lOss arE mOrE lIkEly TO havE prOBlEms ThINkINg aNd rECallINg ThINgs COmparEd wITh adulTs Of ThE samE agE wIThOuT hEarINg lOss, a NEw sTudy shOws.

frank lin, assistant

professor at the john hopkins

university school of medicine and the university’s

Bloomberg school of

public health, Baltimore, us

science & medicine


Mirta Boban Innovation manager on Eu fp7 project glowBrain, university of zagreb, school of medicine, and srećko gajović, professor of histology and Embryology at the university of zagreb school of medicine, Croatia

A new FP7- funded project, GlowBrain, tracks stem cells in the brain using bioluminescent and fluorescent markers by in vivo imaging.

Early last Autumn, Lauba gallery in Zagreb, Croatia, played host to a research team from the University of Zagreb School of Medicine, led by Professor Srećko Gajović, with

a mission to extend the rallying call in the battle against brain diseases – a message that has provided Croatia and the University of Zagreb School of Medicine with a prestigious FP7-funded Eu-ropean project in the field of neuroscience named GlowBrain.

The event, entitled The Night When Brains are Glowing, was organised to promote and raise awareness of stroke, and basic re-search aimed at the development of new therapies for this disease. Intended as a boost for regional research, there are high hopes that GlowBrain will establish Europe as a leader in global innovation.

Professor Gajović’s group will elucidate potential new stroke therapies using stem cells and biomaterials. Moreover, during the three-year period of the project, the group will introduce cutting-edge imaging technologies for examining brains in live animals,

which will enable Croatian scientists to track implanted stem cells during brain damage repair in a mouse experimental model. Implanted stem cells, and indeed brain cells, can be fluorescence-labelled to enable tracking and brain imaging, and hence the project moniker, GlowBrain, arose. (http://www.youtube.com/watch?v=6C6_jTtWxeo).

In addition to providing these state-of-the-art imaging technol-ogies, the project also aims to facilitate the transfer of technologies that have commercial potential, which is expected to aid funding of further research activities. The project has a clear pan-European focus and aims to enhance the overall research and innovation potential at the School of Medicine, as well as improving integra-tion within the European Research Area. Aside from Croatia, the project will see contributions from renowned scientists from Austria, Czech Republic, Italy, Hungary, Germany, Portugal and Sweden, with expertise spanning stem cells, biomaterials, and in vivo animal imaging.

On the evening of 20 September, 2013, over 500 guests, includ-ing a number of local officials and celebrities, gathered to support the project. The entertainment highlight of the evening was a performance by Croatian avant-garde pop singer Massimo Savić of his popular song, Glow in the Darkness (Sjaj U Tami).

Project GlowBrain has made its first step on a long and promis-ing path, whose end will be marked by another Night When Brains are Glowing, due to be held in 2015 when the project completes.

For more information about project GlowBrain, please visit website http://glowbrain.hiim.hr/ and follow GlowBrain’s Facebook profile at https://www.facebook.com/glowBrainCroatia.

a night of fluorescent brilliance

smiles lit by the glow of mobile phones accompanied the sounds of Croatian popstar massimo savić performing glow in the darkness, marking the start of project glowBrain.

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Like most medical societies, the Austrian Society of Neurology (ASN) provides its members with guidance and learning resources,

while ensuring that neurology patients across the country get the best treatment possible. But what makes the ASN a little different is their size: currently they have over 1,000 members, far higher than you might expect given the population.

Eduard Auff, former president of the ASN, and professor of neurology at the University of Vienna, Austria, believes that his field is especially well represented in Austria. “In other countries in Europe, for example the UK, you have approximately the same number of neurologists but ten times the size of the population.”

This is great news for patients, said Professor Auff. “People in Austria can see a neurologist, I would say, quite easily com-pared to other countries.”

And the volume of neurologists means that there is a high degree of specialisation within the field. “There are special out-pa-tient departments for movement disorders, or epilepsy and other conditions,” he ex-plained. “This is very important for patients.”

It’s this size and scope of the ASN that allows it to stand out among neurological societies and get involved in several activi-ties benefiting both doctors and patients.

instant accessThe relatively high number of neurol-ogy departments also helps when urgent treatment is needed, said Professor Auff. “Quick access to therapy is vital for the stroke patients. With our extensive network of neurological departments, patients can access specialist treatment rapidly.”

Building and maintaining a responsive stroke network has been a priority for the society since the 1990s. Acting as a key stakeholder with the healthcare authority, the ASN has ensured that, wherever they are in Austria, patients are always within 45 minutes of a specialised stroke unit.

“We were able to set up these stroke units in a really efficient way, due to our high number of neurological departments,” remarked Professor Auff. In doing so, the society has also been able to offer cohesive and integrated stroke rehabilitation that is structured and carried out at the same sites.

“It’s not just medical treatment or intense treatment in the acute phase,” he added. “It’s necessary to have a continuous treatment, which means that neuro-rehabilitation becomes very important.”

reaching for researchThe ASN also plays a big part in scientific

research, noted Professor Auff. “In Austria we have three public medical universities, and we have around 40 departments of neurology, which is a high number,” he said. The heads of the neurology and neurosci-ence departments are often on the board of the ASN, he adds.

Still learningThe ASN stands out by offering a broad range of training programmes, both at the annual general meeting as well as twice yearly training seminars. Neurologists in training can take part in the seminars, which are usually completed in around three years.

“Specialised topics, for example neuro-oncology, botulinum toxin treatment, and many other things, including deep brain stimulation and epilepsy surgery are covered,” he pointed out. “We cover the kinds of special topics are not done in every hospital.” The society also offers ongoing training and seminars for specialists.

Spreading the wordAs well as its other activities, the ASN does a considerable amount of public rela-tions work.

“We help people find out about neuro-logical diseases, like stroke, MS and Par-kinson’s disease,” explained Professor Auff. “We provide up-to-date information on treatments and diagnostics. We always offer a combination of practical and scientific information,” he added.

Holding around two or three press conferences a year, the society has had a lot of success getting the coverage they seek, whether by newspaper, TV or online media.

Year of the BrainWith 2014 dubbed Year of the Brain in Europe 2014, the ASN will be turning it’s formidable public relations strengths to pro-moting what Professor Auff describes as the most fascinating organ in the human body.

“We think that our brain is one of the most important things, so we’re trying to promote the importance of neurological dis-eases, the treatment of neurological diseases and the diagnosis of neurological diseases,” he highlighted.

“We’re preparing a number of events to make sure Year of the Brain is a suc-cess, and this will be a great opportunity to promote neurology and information on neurological diseases. I think this will be probably the most important thing in our public relations work this year.”

strength in numbers austrian society of Neurology has

record number of members

frEsh frOm hOsTINg ONE Of ThE BIggEsT wOrld CONgrEssEs Of NEurOlOgy EvEr hEld, prOfEssOr Eduard auff, fOrmEr

prEsIdENT Of ThE ausTrIaN sOCIETy Of NEurOlOgy, Talks TO EBCnEws aBOuT why NEurOlOgy IN ausTrIa Is a lITTlE

dIffErENT TO OThEr COuNTrIEs, aNd hOw hE Is alrEady gEarINg up fOr ThE yEar Of ThE BraIN IN EurOpE 2014

Eduard auff, professor of Neurology, university of vienna



EBC member events1st eBC industry Board Meeting10 April 2014

2nd eBC Board Meeting11 April 2014

23rd european Stroke Conference6–9 May 2014Nice, Francewww.eurostroke.eu/default.html

Joint Congress of european neu-rology (efnS-enS)31 May–3 June 2014Istanbul, Turkeyhttp://efns2014.efns.org/

11th european Congress on epileptology29 June – 3 July 2014Stockholm, Swedenwww.epilepsystockholm2014.org/

9th forum of neuroscience (fenS 2014)5–9 July 2014Milan, Italyhttp://fens2014.neurosciences.asso.fr

eanS european Congress of neu-rosurgery 201414 – 17 October 2014Prague, Czech Republichttp://www.eans.org/events/event-322/

27th eCnp Congress18–21 October 2014Berlin, Germanyhttp://www.ecnp.eu/Congress2014/ECNp%20Congress.aspx

Calendar of Events

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dEsIgN peter williams

hEad OffICE 19 jasper road,

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TElEphONE +44 (0) 20 8761 2790

EmaIl [email protected]

wEBsITE www.medifore.co.uk

CONTrIBuTOrs dipak kalra

andreas schmidt

mirta Boban

srećko gajović

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Preparations for this summer’s annual Times Cheltenham Festival of Science are

well under way. This year for-mer EBC president and current President of Year of the Brain, Dr. Mary Baker, will discuss brain disorders with concert pianist Olga Bobrovnikova.

The festival, taking place over 3–6 June this year, began over ten years ago and is now one of the UK’s leading science festivals, its key feature being the deliberate inclusion of contro-versial topics, dissected by a refreshing blend of wit and wis-dom aimed at all ages. Attract-ing the biggest names in science, with former directors such as Robert Winston, Richard Dawk-

ins and Susan Greenfield, the aim of the festival is to entertain and engage the public in scien-tific debate and discovery.

The festival highlights top-ics spanning the length and breadth of science, and EBC past-president Mary Baker will appear in features on the brain and brain disorders, which will showcase exciting new knowl-edge of the brain and what we are yet to learn. She will be speaking to concert pianist Olga Bobrovnikova, who also suffers from relapse-remitting multiple sclerosis (MS). “This disease could have destroyed her life and career; instead, she has chosen to study the neurology of her MS-damaged brain,” said Dr Baker. After a musical performance,

Bobrovnikova will discuss brain research and how music can teach us about the mind.

Plumbing the depths of the unknown brain, Dr Baker will also talk to Science Made Sim-ple communicator James Piercy, who suffered a traumatic brain injury as a result of a car acci-dent in 2011. Now almost fully recovered, he is touring with ‘What’s going on in his head?’, the story of his experiences and

a look at how such injuries are treated. “He is joined by his own consultant neurosurgeon, Peter Hutchinson of Cambridge, UK,” said Dr Baker. “We will discuss the journey to recovery, what we know about acquired brain injury and what the future holds for sufferers.”

More information and tickets can be found at http://www.chelten-hamfestivals.com/science

Cheltenham festival promises engaging public debate

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