The Value of Treatment (VoT) project, a 2-year study initiated by the European Brain Council (EBC) in 2018, has been highlighted in the European Reference Network for Rare Diseases (ERN) Newsletter that is sent on a quarterly basis by the Directorate-General for Health & Food Safety of the European Commission.
According to the European Reference Network on Rare Neurological Diseases (ERN-RND), there are 500,000 people living with rare neurological diseases (RNDs) in Europe, while 60% of those affected are still undiagnosed due to significant phenotype and genotype heterogeneity in clinical presentation and disease course. The Value of Treatment project, which is currently in the second phase, “VoT2” (2018-2021), focuses on the value of early coordinated care for patients affected by rare neurological diseases, with the aim of assessing the benefits of coordinated care and multidisciplinary care patterns on patient outcomes. The objective is to examine health gains and socio-economic impacts resulting from best practice healthcare interventions in comparison with current care or no treatment, and to converge evidence to policy.
The Value of Treatment study analyses the treatment gaps, or barriers, to care and their underlying causes along the whole care process. The research framework is designed by the European Brain Council Board in collaboration with academic partners. Discussions on healthcare focuses too often on the increase of healthcare costs rather than on the benefits of better health. Therefore, the study emphasises the need for more value-based and patient-centred care. The VoT research project, based on the conclusions of a previous EBC pan-European study (2017), The Value of Treatment for Brain Disorders – Policy White Paper, which called for early interventions and a more seamless management of brain diseases, is now focusing on RNDs, aiming to include case studies on ataxia, dystonia, and phenylketonuria. Hundreds of experts from the European Brain Council and the European Reference Networks (ERN-RNDs) and European Reference Network for Hereditary Metabolic Disorders (MetabERN) have worked together to analyse case studies in line with the research framework, applying empirical evidence from different European countries.
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