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

97 patients with Friedreich's ataxia from the UK, Germany, and Italy provided survey data on their diagnosis, management, and healthcare costs. The data compares care experiences between specialist ataxia centres and non-specialist settings. Julie Vallortigara authored this study, which was last updated on May 28, 2026.

Use Cases

• Compare patient satisfaction between specialist and non-specialist care settings based on survey responses.
• Analyze healthcare resource use and costs for Friedreich's ataxia patients based on reported visit data.
• Identify common barriers to accessing specialist care for rare diseases based on patient-reported experiences.
• Inform policy recommendations for rare neurological disorder care across Europe based on the study conclusions.

Strengths

• Data covers a specific cohort of 97 patients with a confirmed diagnosis of Friedreich's ataxia.
• Survey collected information from three distinct European countries: the UK, Germany, and Italy.
• The study directly compares patient experiences and costs between two distinct care settings.

Limitations

• The dataset is a 43.6 KB DOCX file, suggesting it is a supplementary document rather than raw structured data.
• Column-level documentation and sample data are unavailable, limiting immediate analysis.
• The cohort size of 97 patients is relatively small for broad generalization.

Provenance

Source

Julie Vallortigara via figshare

Collection Method

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

Freshness

Last updated 2026-05-28 06:23:00

Geography

United Kingdom, Germany, Italy