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

97 patients with Friedreich's ataxia in the UK, Germany, and Italy provided survey data on their diagnosis, management, and healthcare use. The study, authored by Julie Vallortigara and last updated in May 2026, compares care experiences between specialist ataxia centres and non-specialist settings. Its outcomes are intended for policy recommendations on improving care for rare neurological disorders across Europe.

Use Cases

• Compare healthcare resource use and costs between specialist and non-specialist care settings based on patient survey data.
• Analyze patient satisfaction and perceived value of specialist services for a complex rare condition.
• Identify common barriers to accessing specialist care for rare diseases across different European health systems.

Strengths

• Focuses on a rare neurodegenerative disorder (Friedreich's ataxia) with a specific cohort of 97 patients.
• Provides a multi-country comparison across three European nations (UK, Germany, Italy).
• Explicitly compares patient experiences and costs between specialist and non-specialist care settings.

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 17.7 KB, indicating limited scope.

Provenance

Source

figshare, author Julie Vallortigara.

Collection Method

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

Freshness

Last updated 2026-05-28 06:23:04; freshness should be verified.

Geography

United Kingdom, Germany, Italy.