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

97 patients with Friedreich's ataxia over 16 years old, living in the UK, Germany, and Italy, participated in a survey about diagnosis, management, and healthcare use. The data was collected by Julie Vallortigara via a patient survey to compare care in specialist ataxia centres with non-specialist settings. The dataset was last updated on 2026-05-28.

Use Cases

• Compare patient satisfaction with care based on attendance at specialist ataxia centres.
• Analyze healthcare resource use and associated costs for Friedreich's ataxia patients.
• Identify common barriers to accessing specialist care for rare diseases across different European health systems.

Strengths

• Data covers 97 patients across three distinct European countries (UK, Germany, Italy).
• Includes patient-reported outcomes on satisfaction and perceived value of specialist care.
• Explicitly compares healthcare costs between specialist and non-specialist settings.

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 very small at 33.0 KB, indicating limited scope.

Provenance

Source

Julie Vallortigara via figshare.

Collection Method

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

Freshness

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

Geography

United Kingdom, Germany, Italy.