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

A 2026 study by Julie Vallortigara collected survey data from 97 Friedreich's ataxia patients aged over 16 in the UK, Germany, and Italy. It compares healthcare resource use, costs, and patient satisfaction between specialist ataxia centres and non-specialist settings. The outcomes are intended for policy recommendations on improving care for rare neurological disorders in Europe.

Use Cases

• Compare per-patient healthcare resource use based on survey data on healthcare visits.
• Analyze patient satisfaction with care based on survey responses about care experiences.
• Evaluate the cost-effectiveness of specialist ataxia centres based on reported health service costs.
• Identify barriers to accessing specialist care based on patient-reported experiences across three countries.

Strengths

• Data from 97 patients provides a multi-country cohort for a rare disease.
• Directly compares specialist and non-specialist care settings using patient-reported data.
• Results are intended for concrete policy recommendations.

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 14.9 KB, indicating limited scope.

Provenance

Source

Julie Vallortigara via figshare

Collection Method

Patient survey data collection

Freshness

Last updated 2026-05-28 06:23:03; freshness should be verified.

Geography

United Kingdom, Germany, Italy