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

Julie Vallortigara's dataset contains survey data from 97 patients with Friedreich's ataxia aged over 16 in the UK, Germany, and Italy. The data explores patient pathways, healthcare resource use, costs, and care experiences, comparing specialist ataxia centres with non-specialist settings. The outcomes are intended for policy recommendations to improve care for rare neurological disorders across Europe.

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 for a rare disease.
• Identify common barriers to accessing specialist care for Friedreich's ataxia patients across different European countries.

Strengths

• Data covers 97 patients with a confirmed diagnosis of Friedreich's ataxia.
• Includes comparative analysis from three European countries: UK (27 patients), Germany (14), and Italy (56).
• Licensed under CC-BY-4.0 for open sharing and reuse.

Limitations

• Column-level documentation is absent; field semantics must be inferred after download.
• Row count for the underlying survey data is unknown, which may limit suitability assessment.
• The 4.6 MB file size suggests a small dataset, potentially limiting statistical power.

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.