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

97 patient records from a survey of individuals with Friedreich's ataxia in the UK, Germany, and Italy. The data includes information on diagnosis, management, healthcare visits, and patient satisfaction, comparing specialist ataxia centres to 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 patient survey data.
• Analyze patient satisfaction and perceived value of specialist services for a rare neurodegenerative condition.
• Identify common barriers to accessing specialist care across different European healthcare systems.
• Inform policy recommendations for improving treatment and care for rare neurological disorders.

Strengths

• Data covers 97 patients with a confirmed diagnosis of Friedreich's ataxia.
• Multi-country scope includes the UK, Germany, and Italy.
• Explicitly compares patient experiences in specialist ataxia centres versus non-specialist 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 small (14.7 KB), indicating limited scope.

Provenance

Source

figshare

Collection Method

Data collected via patient survey.

Freshness

Last updated 2026-05-28 06:23:03; freshness should be verified.

Geography

United Kingdom, Germany, Italy