Friedreich's Ataxia Patient Pathways and Healthcare Use in Europe

A cohort of 97 patients with Friedreich's ataxia over 16 years old, living in the UK, Germany, and Italy. Data was collected via patient survey to explore diagnosis, management, healthcare visits, and patient satisfaction, comparing specialist ataxia centres to non-specialist settings. The dataset was authored by Julie Vallortigara and last updated on 2026-05-28.

Use Cases

• Compare patient satisfaction based on attendance at specialist ataxia centres versus non-specialist settings.
• Analyze per-patient healthcare resource use and costs for Friedreich's ataxia across three European countries.
• Identify common barriers to accessing specialist care for a rare neurodegenerative disease.
• Inform policy recommendations for improving treatment pathways for rare neurological disorders.

Strengths

• Includes data from 97 patients across three European countries (UK, Germany, Italy).
• Explicitly compares specialist and non-specialist care settings.
• Results are intended for use in policy recommendations.

Limitations

• The dataset is a 107.1 KB DOCX file, suggesting limited scope and likely a summary document rather than raw data.
• Row count and column-level documentation are unknown, limiting suitability assessment.
• Description metadata is limited; actual data quality requires manual inspection after download.

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 06:22:59; freshness should be verified.

Geography

United Kingdom, Germany, Italy.