ArticleOrphanet journal of rare diseases2023
Patient pathways for rare diseases in Europe: ataxia as an example.
Article in Orphanet journal of rare diseases, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed, 6 citations in OpenAlex.
- Ataxia patient care pathway and associated healthcare costs in Italy: a cross-sectional survey.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Article
- Regional Analysis of the Structural Availability of Physical and Rehabilitation Medicine Services Funded by the National Health Insurance Fund for Patients with Rare Diseases in Bulgaria.Healthcare (Basel, Switzerland) · 2026Article
- European Reference Networks - a flagship activity of the EU in the field of rare and complex diseases: from 2017 to 2025.Orphanet journal of rare diseases · 2026Review
- Evidence-based care pathways for people with dementia and neurodegenerative disorders in Europe: a systematic review of models, integration of digital technologies, and quality indicators.Frontiers in medicine · 2026Review
- Access to specialist ataxia centres in Europe: cross-sectional surveys in the United Kingdom, Italy, and Germany.Frontiers in health services · 2026Article
- Friedreich's ataxia patient pathway in Europe.Frontiers in health services · 2026Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- Hereditary Ataxias in Argentina.Cerebellum (London, England) · 2025Review
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- Impact of specialist ataxia centres on health service resource utilisation and costs across Europe: cross-sectional survey.Orphanet journal of rare diseases · 2023Article
Corrections and comments
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Authors and funding
10 authors at 7 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundProgressive ataxias are rare and complex neurological disorders that represent a challenge for the clinicians to diagnose and manage them. This study explored the patient pathways of individuals attending specialist ataxia centres (SAC) compared with non-specialist settings. We investigated specifically how diagnosis was reached, the access to healthcare services, treatments, and care satisfaction. The focus of this study was on early intervention, coordination of treatment to understand the care provision in different countries.
methodsA patient survey was done in the UK, Germany and Italy to gather information about diagnosis and management of the ataxias in specialist (SAC) and non-specialist settings, utilisation of other primary and secondary health care services, and patients' satisfaction of received treatment.
resultsPatients gave positive feedback about the role of SAC in understanding their condition, ways to manage their ataxia (p < 0.001; UK) and delivering care adapted to their needs (p < 0.001; UK), in coordinating referrals to other healthcare specialists, and in offering opportunities to take part in research studies. Similar barriers for patients were identified in accessing the SACs among the selected countries, UK, Germany, and Italy.
conclusionsThis study provides crucial information about the ataxia patients care pathways in three European countries. Overall, the results showed a trend in patients' satisfaction being better in SAC compared to non-SAC. The outcomes can be used now for policy recommendations on how to improve treatment and care for people with these very rare and complex neurological diseases across Europe.
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