ArticleBMC health services research2025
The organizational dimension in rare and complex diseases care management: an application of RarERN Path
Article in BMC health services research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- 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
- The Role of Digital Tools and Their Implementation Within Patient Care Pathways for Rare Brain Disorders: The Case of Phenylketonuria.European journal of neurology · 2026Article
- 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
- Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases.Orphanet journal of rare diseases · 2024Article
Corrections and comments
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Authors and funding
24 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
methodsThe 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 duplication of services provided to the patients represent some paradigmatic examples of organizational barriers to deliver high-quality patient-centered care and to promote equitable access to healthcare services. Patient care pathways (PCPs) are valuable tools for the (re)design and the (re)definition of the provision of healthcare services to patients. This work represents the first application of the RarERN Path
resultsThe application of some of the phases of RarERN Path
conclusionsThe PCPs proposed for progressive ataxias, dystonia, and PKU provide insight into the value of specialized centers in diagnosing and managing patients with rare and complex conditions and are the results of a co-designed optimized process integrating the good practices of the centers of excellence and expertise with the perspectives of the patients' representatives. This integrated approach allowed for the re-design and optimization of the organizational dimensions of the patient's care pathways.
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Registered trials
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