Friedreich's Ataxia Patient Healthcare Pathways and Costs in Three European Countries

97 patients with Friedreich's ataxia over 16 years old from the UK, Germany, and Italy participated in a survey on diagnosis, disease management, and healthcare use. The data compares patient experiences and costs between specialist ataxia centres and non-specialist settings. The dataset was authored by Julie Vallortigara and last updated on 2026-05-28.

Use Cases

• Compare healthcare resource use and costs between specialist and non-specialist care settings based on the patient survey.
• Analyze patient satisfaction and perceived value of specialist services for a rare disease based on survey responses.
• Identify common barriers to accessing specialist care for Friedreich's ataxia across different European health systems.
• Inform policy recommendations for improving treatment of rare neurological disorders based on patient-reported outcomes.

Strengths

• Data covers 97 patients across three European countries (UK, Germany, Italy).
• Explicitly compares specialist and non-specialist care settings and associated costs.
• Dataset is openly licensed under CC-BY-4.0 for reuse.

Limitations

• Row count is unknown, which may limit suitability assessment.
• Column-level documentation is absent; field semantics must be inferred after download.
• The dataset is very small at 16.6 KB, indicating limited scope.

Provenance

Source

figshare

Collection Method

Data collected via patient survey in the UK, Germany, and Italy.

Freshness

Last updated 2026-05-28 06:23:08; freshness should be verified.

Geography

United Kingdom, Germany, Italy