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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