‘We are the engine’: a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability

‘We are the engine’: a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability

Abstract Background Individuals living with rare congenital malformations and/or intellectual disability often face challenges in accessing appropriate healthcare. Clinical practice guidelines (CPGs) may serve as a tool to provide evidence-based care for rare diseases, but their development is compl...

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Bibliographic Details
Main Authors: Mirthe Jasmijn Klein Haneveld, Chloé Aymée de Mortier, Anne Hugon, Martina Cornelia Cornel, Charlotte Maria Wilhelmina Gaasterland, Agnies Marguerite van Eeghen
Format: Article
Language:English
Published: BMC 2025-04-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Clinical practice guidelines
Patient partnership
Genetic disorder
Intellectual disability
Congenital malformation
Rare disease
Online Access:https://doi.org/10.1186/s13023-025-03673-9
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https://doi.org/10.1186/s13023-025-03673-9

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