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

Julie Vallortigara's dataset contains survey data from 97 patients with Friedreich's ataxia 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 data was collected via patient survey and last updated on 2026-05-28.

Use Cases

• Compare healthcare resource use and costs based on patient survey data.
• Analyze patient satisfaction with care based on reported experiences.
• Identify barriers to accessing specialist care based on survey responses.
• Inform policy recommendations for rare disease management based on cross-country comparisons.

Strengths

• Data covers 97 patients with a confirmed diagnosis of Friedreich's ataxia.
• Includes comparative analysis from three European countries: UK (27 patients), Germany (14 patients), and Italy (56 patients).
• Explicitly compares specialist and non-specialist care settings.

Limitations

• Row count and column-level documentation are unknown, which may limit suitability assessment.
• The dataset is small at 28.0 KB, indicating limited scope.
• Data may reflect geographic bias inherent to the three selected countries.

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 06:23:04; freshness should be verified.

Geography

United Kingdom, Germany, Italy.