Friedreich's Ataxia Patient Pathways and Healthcare Use 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, management, and healthcare use. The data compares patient experiences and costs between specialist ataxia centres and non-specialist settings. The study was authored by Julie Vallortigara and last updated on 2026-05-28.

Use Cases

• Compare patient satisfaction with care based on survey responses about specialist versus non-specialist settings.
• Analyze healthcare resource use and costs per patient based on collected data on healthcare visits.
• Identify common barriers to accessing specialist care based on survey findings from three European countries.
• Inform policy recommendations for rare disease management based on patient-reported experiences and outcomes.

Strengths

• Data covers 97 patients across three European countries (UK, Germany, Italy).
• Explicitly compares patient experiences and costs between two distinct care settings (specialist vs. non-specialist).
• Focuses on a specific, complex rare condition (Friedreich's ataxia).

Limitations

• Dataset is very small at 15.0 KB, suggesting limited scope or detail.
• Column-level documentation is absent; field semantics must be inferred after download.
• Row count is unknown, which may limit suitability assessment.

Provenance

Source

Julie Vallortigara via figshare.

Collection Method

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

Freshness

Last updated 2026-05-28 06:23:02; freshness should be verified.

Geography

United Kingdom, Germany, Italy.