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

97 patients with Friedreich's ataxia over 16 years old, living in the UK, Germany, and Italy, were surveyed by Julie Vallortigara. The data compares healthcare resource use, costs, and patient satisfaction between specialist ataxia centres and non-specialist settings. The work was last updated in May 2026.

Use Cases

• Compare healthcare resource use and costs between specialist and non-specialist care settings based on the survey methodology.
• Analyze patient satisfaction and perceived value of specialist ataxia centre services based on the survey results.
• 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 the study conclusions.

Strengths

• Data is focused on a specific rare disease (Friedreich's ataxia) with a cohort of 97 patients.
• Provides a multi-country comparison covering the UK, Germany, and Italy.
• Explicitly compares patient experiences and costs between specialist and non-specialist care settings.

Limitations

• Dataset scale is very small at 15.4 KB; row and column-level details are unknown.
• Column-level documentation is absent; field semantics must be inferred after download.
• Data may reflect geographic bias inherent to the three selected European countries.

Provenance

Source

Julie Vallortigara via figshare

Collection Method

Patient survey administered in the UK, Germany, and Italy.

Freshness

Last updated 2026-05-28 06:23:07; freshness should be verified.

Geography

United Kingdom, Germany, Italy