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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Throughout the Congress, EBC welcomed Congress attendees to the exhibition booth, handing out the latest Value of Treatment Discussion Paper, the Call to Action and Consensus Paper, and the latest Joint Statement on Depression released on this year’s WHO World Health Day. Furthermore, details on EBC’s mental health at the workplace initiative, Not Myself Today, were available and countless people across the Congress were later spotted wearing the initiative’s iconic “Mood Buttons” proclaiming how they were feeling that day.

EBC was extremely pleased to contribute to the congress through a joint Symposium with EPA on EBC’s Value of Treatment (VoT) for brain disorders research project evaluating the treatment gap of mental and neurological brain disorders, where EBC President Prof. David Nutt and Vice-President Prof. Patrice Boyer presented EBC and the VoT project as a whole. Value of Treatment project experts Prof. Michela Tinelli of the London School of Economics (LSE) and Dr. Nick Guldemond of Erasmus University Rotterdam presented their work throughout the project, examining the Economic Analysis and costs of non-treatment and the Patient Journey, respectively. Lastly, Prof. Wolfgang Gaebel, Immediate Past President of the European Psychiatric Association (EPA) and Schizophrenia Working Group member, presented the preliminary results of the work completed in his particular working group.

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