The organizational dimension in rare and complex diseases care management: an application of RarERN Path© methodology in ataxias, dystonia and phenylketonuria

The organizational dimension in rare and complex diseases care management: an application of RarERN Path© methodology in ataxias, dystonia and phenylketonuria

Abstract Background and methods The organization of care profoundly impacts the variability in the quality of care provided to patients and the equity of access to care. The lack of coordination of care, of communication among healthcare providers, healthcare professionals, and patients, and the dup...

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Main Authors: Sara Cannizzo, Vinciane Quoidbach, Leopoldo Trieste, Monika Benson, Antonio Federico, Alessandro Filla, Bernadette Sheehan Gilroy, Paola Giunti, Holm Graeßner, Julie Greenfield, Tobias Hagedorn, Alvaro Hermida, Barry Hunt, Anita MacDonald, Francesca Morgante, Wolfgang Oertel, Gregory Pastores, Martje G. Pauly, Carola Reinhard, Maja Relja, Eileen Treacy, Francjan Van Spronsen, Julie Vallortigara, Giuseppe Turchetti
Format: Article
Language:English
Published: BMC 2025-06-01
Series:BMC Health Services Research
Subjects:
Neurological diseases
Rare neurometabolic diseases
Progressive ataxia
Dystonia
Phenylketonuria
Organization of care
Online Access:https://doi.org/10.1186/s12913-025-12784-9
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https://doi.org/10.1186/s12913-025-12784-9

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