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

A cohort of 97 Friedreich's ataxia patients aged over 16 in the UK, Germany, and Italy provided survey data on diagnosis, management, healthcare visits, and satisfaction. The data compares care experiences between specialist ataxia centres and non-specialist settings. Author Julie Vallortigara published the dataset on figshare in May 2026.

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 ataxia centre services mentioned in the description.
• Identify common barriers to accessing specialist care for rare diseases across different European healthcare systems.
• Inform policy recommendations for improving treatment pathways for rare neurological conditions based on patient-reported outcomes.

Strengths

• Data covers 97 patients across three European countries (UK, Germany, Italy), providing a multi-national perspective.
• Explicitly compares patient experiences and costs between specialist and non-specialist care settings.

Limitations

• Column-level documentation is absent; field semantics must be inferred after download.
• Row count is unknown, which may limit suitability assessment.
• The dataset is very small at 25.5 KB, indicating limited scope.

Provenance

Source

Author Julie Vallortigara via figshare.

Collection Method

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

Freshness

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

Geography

United Kingdom, Germany, Italy