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 over 16 years old, living in the UK, Germany, and Italy. The data was collected to explore patient pathways, healthcare use, costs, and care experiences, comparing specialist ataxia centres with non-specialist settings. The outcomes are intended for policy recommendations to improve treatment and 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 based on survey responses.
• Identify common barriers to accessing specialist care for rare diseases across different European healthcare systems.
• Inform policy recommendations for improving care pathways for rare neurological disorders based on patient-reported outcomes.

Strengths

• Data covers 97 patients across three European countries (UK, Germany, Italy), providing a multi-national perspective.
• Focus on a specific rare disease (Friedreich's ataxia) allows for detailed analysis of a specialized patient population.
• Explicitly compares two care models (specialist ataxia centres vs. non-specialist settings), enabling comparative analysis.

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 (17.8 KB), indicating limited scope and sample size.

Provenance

Source

Julie Vallortigara via figshare

Collection Method

Patient survey data collected in the UK, Germany, and Italy.

Freshness

Last updated 2026-05-28 06:23:02; freshness should be verified.

Geography

United Kingdom, Germany, Italy