ArticleFrontiers in health services2026
Friedreich's ataxia patient pathway in Europe.
Article in Frontiers in health services, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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12 authors.
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Abstract
Background: Friedreich's ataxia (FA) is a rare progressive and multi systemic neurodegenerative disorder characterized by loss of coordination, typically resulting in loss of ambulation. Cardiomyopathy, diabetes mellitus, and scoliosis are common and serious manifestations of the disease. This project explores the FA patient pathways, healthcare use and costs, and compares people's care experiences attending specialist ataxia centres (SAC) with care in non-specialist settings in three European countries. Methods: We collected data in the UK, Germany and Italy using a patient survey, to gather information about the diagnosis and the management of the ataxias in SAC and non-SAC settings, healthcare visits, and patient's satisfaction. We compared per-patient mean resource use for each contact type and health service cost, stratifying patients by SAC attendance. Results: Our cohort is 97 patients with FA over 16 years old, living in UK ( Conclusions: This study shows the value of SAC specifically for the management of complex rare conditions like FA. The outcomes of our work will be used for policy recommendations on how to improve treatment and care for people with rare neurological disorders across Europe.
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