Patient pathways for rare diseases in Europe: ataxia as an example

• Published in: Orphanet journal of rare diseases Vol. 18; no. 1; pp. 1 - 10
• Main Authors: Vallortigara, Julie, Greenfield, Julie, Hunt, Barry, Hoffman, Deborah, Reinhard, Carola, Graessner, Holm, Federico, Antonio, Quoidbach, Vinciane, Morris, Steve, Giunti, Paola
• Format: Journal Article
• Language: English
• Published: London BioMed Central Ltd 17.10.2023; BioMed Central; BMC
• Subjects: Ataxia; Care and treatment; Care pathway; Comparative analysis; Diagnosis; Feedback; Health care; Health care industry; Health surveys; Medical care; Medical research; Medicine, Experimental; Nervous system diseases; Neurological diseases; Patient satisfaction; Patient survey; Patients; Primary care; Rare diseases; Specialist centre; Surveys; Utilization; Italy; United Kingdom; Germany; United Kingdom > UK; Europe

Progressive 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 specific...