Motivated by addressing the existing gaps in the care pathways, the EBC Study on Ataxia, Dystonia and Phenylketonuria (PKU) aims to assess the benefits of early coordinated care and treatment, multidisciplinary care patterns (also addressing comorbidity) and health care providers education on outcomes to patients and costs.

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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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