The European Brain Council had the chance to attend the European Associations of Neurosurgical Societies 2024 Congress which was held from 13-17 October 2024 in Sofia (Bulgaria). Attended by 2.000 neurosurgeons from Europe and all over the world, the EANS Annual Congress is the main meeting point of the European Neurosurgical Community, and the connecting link between European Neurosurgery and all continental neurosurgical societies. This year, the theme was “Innovation, Education, Leadership”, reflecting the current need to thoroughly discuss the future of neurosurgery in connection with technological advances that can improve neurosurgical education, training and treatment, aiming to create the next leaders of neurosurgery in Europe and all over the globe.

The EANS congress started with a grand opening ceremony by EANS President Prof. Torstein Meling, an appearance of Kukeri dancers as well as a traditional Bulgarian dance. 

Building Brain Health in Europe

EBC took part in a session titled “Building Brain Health in Europe”. This session featured a series of presentations by prominent experts in the field of brain health. Prof Torstein R. Meling chaired the session. Speakers included Prof Thomas Berger, Prof Suzanne Dickson, Tarek Yousry, Prof Johnny Duerinck, Dr Niklas Marklund, Majda Thurnher, Dr Ricardo Chavarriaga, and Dr Eric Suero Molina. Topics covered various aspects of brain health, including neuroradiology, the impact of brain tumours, traumatic brain injury, and stroke, as well as the role of neurosurgery in modern psychiatry.

Prof. Suzanne Dickson, EBC President, presented the advocacy work in the brain space undertaken at the European level and explored the importance of the work currently being done. Furthermore, she highlighted the potentials for strengthened collaboration and the needs going forward for the benefit of all within the brain space, particularly with a spotlight on neurosurgery, neurology and neurological conditions (including the clinicians that treat them and the patients that live with them). Dr Ricardo Chavarriaga explored the ethics of neuroprosthetics and looked into the development of government mechanisms for the use of technology (such as artificial intelligence and big data) to safeguard rights on mental privacy. This protects individuals from the use of data obtained during the measurement of their brain activity without their consent and expressly prohibits any commercial transaction involving this data. His work focuses on leveraging neuroscience, AI, and ethics for advancing responsible innovation and governance of human-centred technology.

With EBC currently leading the drafting on a European Charter for the Responsible Development of Neurotechnologies, this important topic was also brought forward. The growing accessibility and portability of neurotechnologies have now expanded their use into the general consumer market, which raises crucial ethical and societal issues. Medical devices cannot be placed on the European market without conforming to strict requirements and non-medical applications (including products for neurostimulation and neurofeedback in work, education, entertainment and marketing) show lack of thorough scientific assessment, ethical supervision and regulation. The European Charter for the Responsible Development of Neurotechnologies builds on existing mechanisms of governance and complements existing legislation by contributing to human-centred risk evaluation, addressing gaps and shedding light on grey areas deserving robust governance. For this, EBC brought together organisations of people living with brain conditions, organisations of professional actors in health, research and ethics, policymakers and industry to support greater wellbeing and sustainable economic growth and guide public policy, activities of companies and investment.​

​Lastly, EBC was present at the Congress with a booth in the exhibition area, where we shared more information about ongoing projects, latest activities, and upcoming events! We are looking forward to next years’ EANS congress, taking place from October 5 to 9 in Vienna!

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The European Brain Council had the chance to attend the 32^nd European Congress of Psychiatry which was held on 6-9 April 2024 in Budapest (Hungary). The Congress took place under the motto ‘Mental Health: Open and Inclusive!’. It highlighted three core aspects of modern psychiatry:

• Mental health as a broad dimension from mental health prevention and resilience building to the treatment of specific disorders.
• Open refers not only to our fundamental human rights but also to open mindedness and curiosity for novel approaches and ideas.
• Inclusive implies welcoming and respecting differences between people.

Assessing the Value of Mental Health Treatments for Youth in Europe

EBC held the Symposium “Assessing the value of mental health treatments for youth in Europe” on Sunday 7 April 2024 to raise awareness on mental disorders and their societal impact. The session highlighted the case studies falling under the 2nd round of the Value of Treatment project, coordinated by EBC.  

The morning kicked off with a welcome address from the meeting Chairs: Prof. Danuta Wasserman, M.D., Ph.D. Professor of Psychiatry and Suicidology, Karolinska Institutet, Stockholm, Sweden and Prof. Judit Balazs, Chair, EPA Scientific Section on Child and Adolescent Psychiatry, Eotvos Lorand University, Budapest, Hungary, Oslo New University College, Oslo, Norway. Danuta Wasserman and Judit Balazs stressed the importance to join forces for policy implications towards an enabling ecosystem for mental disorders focusing on youth needs.    

Prof. Celso Arango, Department of Child and Adolescent Psychiatry, Institute of Psychiatry and Mental Health, Hospital General Universitario Gregorio Marañón, IiSGM, School of Medicine, Universidad Complutense, CIBERSAM, Madrid, Spain, presented the results of the study on Autism care pathway in Europe. Celso Arango stressed the importance of early intervention. Despite autism’s known societal and personal impact, Europe-wide consensus and support for early detection, diagnosis, and intervention are lacking. The findings call for policy harmonization in Europe to shorten long wait times for diagnosis and personalized support and therefore, improve autistic people and their families’ journey experience and quality of life.  

“The earliest the intervention for autistic children, better the prognosis is. It is essential that early screening is provided to children by psychiatrists with the key role of primary care providers and pediatricians so that treatment can start early and improve the efficiency of the treatment received by this population.”

Prof. Celso Arango, Hospital General Universitario Gregorio Marañón

Prof Allan Young, King’s College London, United Kingdom then presented the results of the study on Care pathways for people with major depressive disorder. Allan Young highlighted that many individuals with major depressive disorder are not receiving treatment at any one time, and it is known that both duration of untreated illness and the number of ineffective treatments trialed are risk factors for poorer long-term outcomes.

“Together, these phenomena demonstrate a need for improved management of major depressive disorder. Data on the costs of illness need to be shared with policy makers. Beyond prevention, continuity of care is also valuable from an economic perspective.” 

Prof Allan Young, King’s College London

“Severe anorexia nervosa requires long and extensive stay of in-patient care. Evidence suggests specialist eating disorders services for adults with anorexia nervosa have the potential to improve outcomes and reduce costs through reduced hospital admissions.” 

Prof. David McDaid, London School of Economics and Political Science

Prof. David McDaid, Health Policy and Health Economics at the Care Policy and Evaluation Centre, Department of Health Policy at the London School of Economics and Political Science, drew attention on the findings from the recent study on Economic modelling of the Value of Early Intervention and Continuity of Care for Anorexia Nervosa in England, Germany and Spain: improving the care pathway.

“Analyzing multiple diseases jointly also made the resulting conclusions more impactful for public health and reinforced the call for pan-European actions. Future efforts towards optimal mental health care pathways will require both explicit value and affordability considerations and the alignment of relevant public reimbursement plans in order to reduce the already immense economic burden on patients and families”.  

Prof. Judit Simon, Medical University of Vienna

Prof. Judit Simon, Department of Health Economics, Center for Public Health, Medical University of Vienna, Austria, closed the session addressing the need to Assessing the value of mental health treatments in Europe. The EBC Value of Treatment case studies found that, although established clinical guidelines are available for Anorexia Nervosa, Autism Spectrum Disorder, and Major Depressive Disorder, there are major geographical care variations in Europe, leading to reduced effectiveness and efficiency and substantial negative health impacts. Due to the lack of relevant surveillance and monitoring tools, the magnitude of these care variations remains unknown. Furthermore, outcome and cost estimates remain limited due to the underdeveloped evidence base. Nevertheless, the case studies confirm the added value of early detection and intervention and the implementation of a continuous and comprehensive cross sectoral approach as opposed to fragmentation in separate medical (and non-medical) “silos”. Beyond prioritizing early detection and prevention, the challenges of data for a cross sectoral approach remain but there are existing tools to address these.

Prof. Danuta Wasserman and Prof. Judit Balazs concluded that policy prioritization on prevention, adequate treatments and a cross sectoral approach for mental disorders is essential for youth with mental disorders. Three-quarters of all mental health disorders develop before age 25, with many presenting initially in undiagnosed forms already in the mid-teens and eventually manifesting as severe disorders and lasting into old age. Vinciane Quoidbach, EBC Research Project Manager thanked the Speakers and the Chairs for the high-quality presentations and their insightful contribution to the EBC session. The robustness of the case study results related to anorexia nervosa, autism spectrum disorder and major depressive disorder demonstrates the added value of such research combining a care pathway analysis, mental health economics study and intercountry healthcare assessment. Some elements of an enabling ecosystem, however, remain universal such as health promotion, transition, and integrated care – key to avoid dropouts; more work on stigma; important educational tasks for the psychiatrists and the mental health community with a real emphasis on people with severe mental illness and their needs. The Session ended after a fruitful open discussion engaging the audience.  

EBC Value of Treatment (VOT) Study Results

The European Psychiatry

Look Back at the Slides

Rethinking Schizophrenia: Beyond the Voices

EBC also had an e-poster viewing “Rethinking Schizophrenia: Beyond the Voices” in the e-poster area. The e-poster featured the recently published policy report “Rethinking Schizophrenia: Beyond the Voices”. Rethinking Schizophrenia is a research-driven project, coordinated by EBC, offering tangible policy changes to improve the lives of people living with schizophrenia across Europe. It challenges the status quo and refreshes the European policy debate on people living with schizophrenia and encourages multi-stakeholder-driven policy. The project falls under #BeyondTheVoices campaign.

Despite improvements and innovation in recent years, people living with schizophrenia face variations in access to optimal treatment and care. There is a lot about schizophrenia that is not fully understood and the high-quality care and support needed by people living with this condition is often unavailable. 

There is a clear need to rethink the management of schizophrenia and redesign the care pathways to ensure optimal treatment and care for all people living with schizophrenia in Europe. Based around patient testimonies, the aim of the project is to highlight the need to optimise the way we manage schizophrenia by building a strong, coherent, evidence-based policy narrative which speaks to the current priorities in schizophrenia and draws from the current policy landscape in Europe.

Throughout the congress, EBC held a booth in the exhibition space where the participants had the chance to learn more about the current projects, the ongoing activities and the upcoming events.

The next edition of the European Congress of Psychiatry will take place on 5-8 April 2025 in Madrid (Spain). The Congress will be held under the overarching theme “Towards Real-World Solutions in Mental Health”. You can look forward to excellent science, high-level educational programmes and a clear focus on clinical implementation.

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The 13th International Autism-Europe Congress is the first full online Congress with high quality access to its sessions, presentations, workshops, discussion panels and more. You can join in person as well, in the historical city of Cracow. The Congress brings expertise from around the world to promote a positive vision for autistic people and their families.

“Happy Journey through Life” is the theme of the Congress – to highlight the importance of taking a lifespan perspective on autism research and practice, with the promotion of wellbeing for all being the focal point.

EBC looks forward to presenting the following sessions:

• The value of treatment study: Autism care pathway in Europe (7 October, 17:00-18:00; Oral Session)

Autism is a lifelong complex neurodevelopmental condition of early onset that affects brain development and behaviour, characterised by difficulties in social communication, restricted and repetitive patterns of behaviour, interests or activities, and sensory issues which have significant consequences in daily life. 

The Value of Treatment (VOT) study results on autism care pathway in Europe will be presented. Early intervention can play a crucial role in the earlier social-communicative and emotional development which will act as a bridge for other more complex abilities. The primary goal of early intervention is to maximize functional independence and quality of life. Despite its great societal and personal impact, Europe-wide consensus and support for early detection, diagnosis, and intervention of autism are lacking.  

• Autism with associated epilepsy care pathway in Europe (8 October, 9:00-13:00; Poster Presentation)

Autism and epilepsy are frequently associated. The prevalence of epilepsy in autism is greater than in the general population. Electroencephalography (EEG) has been used to investigate epilepsy in autism. EEGs are recommended if there is clinical suspicion of epilepsy. However, the clinical identification of seizures in autism can be challenging because some of the features of seizures such as staring spells, non-responsiveness and repetitive motor behaviours are also manifestations of autism. 

Associated conditions in autism such as epilepsy have a substantial impact on the well being of autistic people and their families, contribute to reduced quality of life and may increase premature mortality. Despite this, there is a current lack of studies assessing the journey experienced by autistic children with co-occurring epilepsy and their families in Europe. The VOT study on Autism with associated epilepsy care pathway in Europe will be presented. 

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Recent studies underscore the severity of the mental health challenges children and adolescents face that can lead to high disability. There are numerous unmet needs along the care pathways, although effective early detection and interventions exist. Navigating the mental health services system is often complex for families, due to fragmented or disrupted services.

The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project coordinated by the European Brain Council. The second round (VOT2) on new therapeutic areas (anorexia nervosa, autism spectrum disorder and major depressive disorder) was launched in 2019. This semester will be an important milestone in terms of case study results dissemination. The study looked at early intervention and explored the benefits of improved detection, continuity of care and treatment, and collaborative care patterns (also addressing mental health problems with comorbid medical conditions) on outcomes to patients and costs. Case studies which combine a care pathway analysis followed by an economic evaluation were conducted with the support of Academic Partners, applying empirical evidence from different European countries. 

The European Brain Council (EBC) and the European Psychiatric Association (EPA) will convene a meeting at the upcoming EPA Congress 2022 to address challenges especially from the health economics perspective. Study results from VOT2 case studies on anorexia nervosa, autism spectrum disorder and major depressive disorder, will be showcased. In this symposium, we report the findings of the groups of the Value of Treatment initiative and contextualise these by highlighting the limitations of existing economic models; the gaps in data availability; current research to address these gaps as well as directions for future research that will improve our ability to make the economic case for investment as well as our understanding of the patient experience and journey. 

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The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project coordinated by the European Brain Council (EBC). According to the World Health Organization, disorders of the brain affect up to one in three people worldwide. 

A second round (VOT2) on new therapeutic areas was launched in 2019, focusing on The Value of Early Diagnosis and Coordinated Care for Rare Diseases (Ataxia, Dystonia and Phenylketonuria); and The Value of Early Intervention and Continuity of Care for Mental Disorders (Anorexia Nervosa, Autism Spectrum Disorder and Major Depressive Disorder).

Prof. Anita MacDonald will present a case study on phenylketonuria (PKU) at the 14th European Paediatric Neurology Society Congress in Glasgow, on 1 May (10:20 – 10:40).

The post Value of Treatment (VOT) case study on phenylketonuria (PKU) | EPNS Congress 2022 appeared first on European Brain Council (EBC).

The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project coordinated by the European Brain Council (EBC). According to the World Health Organization, disorders of the brain affect up to one in three people worldwide. 

A second round (VOT2) on new therapeutic areas was launched in 2019, focusing on The Value of Early Diagnosis and Coordinated Care for Rare Diseases (Ataxia, Dystonia and Phenylketonuria); and The Value of Early Intervention and Continuity of Care for Mental Disorders (Anorexia Nervosa, Autism Spectrum Disorder and Major Depressive Disorder).

Prof. Paola Giunti will present a case study on ataxia at the 14th European Paediatric Neurology Society Congress in Glasgow, on 30 April (10:20 – 10:40).

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COVID-19 presents an opportunity to reset fragmented health and care systems so that they are integrated, driven by people and communities and resilient in the face of future systemic shocks. Even before the pandemic, the burden of mental health problems in Europe was very high, with more than one in 4 people experiencing a mental health problem. And the situation has been exacerbated by the sanitary crisis. Given the chronic nature of mental disorders like depression, this translates into a significant medical, social and economic impact worldwide. According to the World Health Organization, today countries spend less than 2% of their health budgets on mental health. However, much more can be done to manage and promote mental health efficiently. 

The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project coordinated by the European Brain Council (EBC). Our preferred scenario “Investment for Equal Access” is defined by the innovation driven by patient’s unmet needs and the value of treatment. Conclusions of a first VOT study (VOT1) link early intervention to measurable health gains such as improved recovery rates, reduced complications and disability, better quality of life and lower treatment costs for people affected by schizophrenia. In 2019, in order for the research to dig deeper into the current unmet needs in mental health care using a value-based approach, a second round (VOT2) on new therapeutic areas was launched; focusing on the value of early intervention and continuity of care for anorexia nervosa, autism spectrum disorder and major depressive disorder. Results of the case studies will be released during the 2022 Brain Awareness Week.  

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