The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project launched in 2015, with the objective of identifying treatment gaps (or barriers to care) along the care pathway and proposing solutions to address them; assess health gains and socio-economic impacts resulting from best practice healthcare interventions; and converge data evidence to policy recommendations on how to improve the care pathways. The second round (VOT2) on new therapeutic areas was launched in 2019, focusing on The Value of Early Diagnosis and Coordinated Care for Rare Diseases; and The Value of Early Intervention and Continuity of Care for Mental Disorders.
The Value of Early Diagnosis and Coordinated Care for Rare Brain Diseases
Focused on rare neurological diseases and neurometabolic disorders ataxia, dystonia and phenylketonuria, the study looked at early intervention and explored the benefits of coordinated care through the examination of health services, multidisciplinary care patterns (also addressing comorbidity), patient outcomes and costs. Results provide insight into the value of specialist centres for ataxia and dystonia and metabolic care units for phenylketonuria in terms of diagnosis, management of patients with rare conditions. Results are now available from the individual working groups, accompanied by a Call to Action for a renewed EU Action Plan on Rare Diseases targeting unmet needs.
EBC calls on the European Commission and EU countries to renew a European action plan on rare diseases. This would bring together existing efforts across different legislation and EU programmes under a coherent framework to spearhead change and align EU countries towards the same measurable goals to ultimately improve survival, quality of life and clinical guidelines harmonisation.
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