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

97 patients with Friedreich's ataxia across the UK, Germany, and Italy provided survey data on their diagnosis, management, and healthcare experiences. The data compares care at specialist ataxia centres with non-specialist settings, focusing on resource use, costs, and patient satisfaction. Julie Vallortigara authored this study, which was last updated on 2026-05-28.

Use Cases

• Compare patient satisfaction and perceived value of care based on attendance at specialist ataxia centres versus non-specialist settings.
• Analyze healthcare resource use and associated costs for managing a complex, progressive rare disease.
• Identify common barriers to accessing specialized care for rare neurological disorders across different European health systems.
• Inform policy recommendations for improving treatment and care pathways for rare diseases.

Strengths

• Data covers 97 patients with a confirmed diagnosis of Friedreich's ataxia.
• Survey collected information from three distinct European countries: UK (27 patients), Germany (14), and Italy (56).
• Analysis includes a direct comparison of specialist and non-specialist care settings, a key feature of the study.

Limitations

• The dataset is stored as a 32.9 KB DOCX file, suggesting it may be a summary document or report rather than raw, structured data.
• Row count and column-level documentation are unknown, limiting assessment of data granularity and structure.
• The data may reflect geographic bias inherent to the three selected European countries.

Provenance

Source

figshare

Collection Method

Data collected via a patient survey in the UK, Germany, and Italy.

Freshness

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

Geography

United Kingdom, Germany, Italy