As in the 1st Value of Treatment, analyzing the treatment gap and underlying causes, particularly related to health services delivery, remains central in the study. The study’s research framework includes the development of a series of qualitative and quantitative benchmarks to identify treatment gaps “barriers to care” and causal factors along the continuum of care from early diagnosis to disease management including rehabilitation and patient empowerment (patient care pathway analysis) as well as to estimate the socioeconomic impact and health gains from best practice healthcare interventions in comparison with current care (economic evaluation/cost-consequences analysis). The two-year study on the value of early diagnosis and intervention for rare neurological disorders will aim to assess the benefits of coordinated care and multidisciplinary care patterns on patient outcomes. The overall objective is to propose policy recommendations on how to provide optimal care in the disease area under study by addressing the current treatment gaps/unmet needs.

The aim of the meeting was to provide a VoT2 RNDs-MDs project update, and discuss research scope (care pathways, outcome variables measurement including economic analysis) and next steps. The meeting was also the opportunity to in-depth discuss the characteristics of the new VoT2 therapeutic areas,  exchange on working group updates on patient survey outline as  well as reiterate the need to continue building synergies with current EU initiatives such as the European Reference Networks for Rare Diseases (ERNs).

*ASD is the latest addition to the mental disorders working groups; the working group kick-off meeting was held on the same day.

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EBC was present in the exhibition hall to raise awareness of the work being done in Brussels with the recently released Brain Mission and brain research advocacy work, as well as to continue dissemination of the Value of Treatment project concluded last year.

On Sunday, 17 June, EBC Vice-President Prof. Wolfgang Oertel and EBC Treasurer Ms Joke Jaarsma gave presentations at the Scientific Theatre, which allowed for 15 minute overviews of a series of topics. Their talk was entitled “Mind the Treatment Gap!” and covered the unmet needs of Europe in regards to treatment of patients, early intervention as well as a deeper insight into the RLS working group of the Value of Treatment project. Furthermore, Prof. Maura Pugliatti gave a presentation on “Improved patient journey in neurology” which covered the results of the Multiple Sclerosis working group also witin the Value of Treatment project.

On Monday, 18 June, EBC took part in a joint session with EAN and EFNA on the Value of Treatment for Brain Disorders in Europe, chaired by Prof. David B. Vodušek, Prof. Maura Pugliatti, and EBC Vice-President Prof. Wolfgang H. Oertel, with presentations on Brain disorders in Europe: unmet needs by EBC Vice-President, Prof. Wolfgang H. Oertel; The value of early diagnosis and treatment. A patient journey by EBC Treasurer, Joke Jaarsma; The Value of Treatment: using economic modelling to assess costs and outcomes associated with healthcare interventions by Dr. Michela Tinelli of the London School of Economics; and The value of early treatment by Prof. Maura Pugliatti.

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The well-attended and fruitful event was held under the title “The Value of Early Intervention in Brain, Mind and Pain Conditions”,  and included two panel discussions:

The first panel addressed the conclusions and recommendations of EBC’s Value of Treatment research project and White Paper, and explored the value of early intervention, using the case-studies of four disorders – presented from various stakeholder perspectives –and how the EU can support the solutions identified. The panel, led by Paul Arteel (GAMIAN-Europe), included presentations from the Stroke (An epidemiologist and neurologist’s perspective – Dr. Alistair Webb, UK), Multiple Sclerosis (A public health and policy’s perspective – Ms. Vinciane Quoidbach, Belgium), RLS (A patient’s perspective – Ms. Joke Jaarsma, Netherlands) and Schizophrenia (Families’ perspectives – Ms. Aagje Ieven, EUFAMI, Belgium) working groups.

The second panel, chaired by Ann Little, President of the European Federation of Neurological Associations (EFNA), focused on the possible next steps in the Value of Treatment project – exploring the application of the developed methodology to other disease areas e.g. rare diseases or chronic pain, as well as a future focus on interventions such as rehabilitation.

MEP Michał Boni began the discussion by discussing a move and need towards Integrated Care, and Ms Vinciane Quoidbach, Public Health Policy, Research Project Manager Value of Treatment Research Project at EBC presented the Value Proposition of a second VoT project.

The panel then continued into a discussion on potential case studies, addressing unmet needs, with presentations on rare diseases (such as Ataxia): A neurologist’s perspective – Prof. Paola Giunti, UK, Myalgic Encephalomyelitis: A patient perspective – Nancy van Hoylandt, Belgium and Chronic Pain: A researcher’s perspective – Dr. Nick Guldemond, University of Rotterdam.

Before the panels concluded with a Q&A from the audience, Guest speaker Stephane Hogan, Head of Neuroscience, DG Research & Innovation gave his report on the work of the Commission and the continued support and dedication to brain research.

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