Friedreich's Ataxia Patient Pathway Survey 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 was collected by author Julie Vallortigara and last updated on 2026-05-28. It compares patient experiences and costs between specialist ataxia centres and non-specialist settings.

Use Cases

• Compare healthcare resource use and costs based on patient attendance at specialist centres.
• Analyze patient satisfaction and perceived value of specialist care based on survey responses.
• Identify common barriers to accessing specialist care for rare diseases based on patient-reported data.

Strengths

• Data covers 97 patients across three European countries (UK, Germany, Italy).
• Focus on a rare disease (Friedreich's ataxia) with multi-systemic manifestations.
• Explicitly compares specialist and non-specialist care settings.

Limitations

• Dataset is very small at 40.9 KB, suggesting limited scope.
• Column-level documentation is absent; field semantics must be inferred after download.
• Row count is unknown, which may limit suitability assessment.

Provenance

Source

figshare

Collection Method

Patient survey collecting information on diagnosis, management, healthcare visits, and satisfaction.

Freshness

Last updated 2026-05-28 06:23:01; freshness should be verified.

Geography

United Kingdom, Germany, Italy