The International Congress for Ataxia Research (ICAR), to be held on 1-4 November 2022, will take place in Dallas, Texas (USA).

This Congress will combine the best of our organizations’ popular research meetings, including NAF’s Ataxia Investigators Meeting (AIM) and the International Ataxia Research Conference (IARC), co-led by FARA, Ataxia UK, GoFAR, and other partner organizations. ICAR 2022 will include plenary sessions, poster sessions, breakouts and workshops.

Featured topics include: gene discovery, disease mechanisms, cerebellar non-motor circuits and functions, emerging and existing therapeutics, biomarkers and late breaking research. ICAR will also feature workshops with practical demonstrations, discussions on challenges of new and established technologies, and sessions specifically designed by and for junior investigators.

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In the framework of this project, new case studies within a second round of the VOT research (VOT 2) have been developed. Studies on new therapeutic areas focusing on:

• rare neurological diseases (Ataxia, Dystonia and Phenylketonuria)
• mental disorders (Anorexia Nervosa, Autism Spectrum Disorder, Major Depressive Disorder)

were launched respectively in 2018 and in 2019.

As a follow-up to the 6th October 2020 VOT 2 consensus meeting and as part of the consolidation of the economic analysis and the proposed approach for more homogeneity in treatment and organization of care for the pathologies under study, two working sessions were organized on 11 December 2020.

For the Value of Treatment 2 – mental health disorders groups (Anorexia Nervosa, Autism Spectrum Disorder, Major Depressive Disorder), aim of this informative session was to interact with Judit Simon, Professor of Health Economics Medical University of Vienna, Austria on potential options for harmonization across case studies using the EU Horizon 2020 Pecunia project tools as an example.

For the Value of Treatment 2-rare diseases groups (Ataxias, Dystonia, Phenylketonuria), aim of the session was to discuss the “optimized” care pathway approach method proposed by Giuseppe Turchetti, Professor of Health Economics, Scuola Superiore Sant’ Anna – Pisa, Italy and to complement the WGs ongoing extremely valuable research (surveys and statistical analysis).

For more information on the Value of Treatment project, see here.

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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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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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