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JIMD Reports, p. 65-70

DOI: 10.1007/8904_2014_387

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Evaluation of Implementation, Adaptation and Use of the Recently Proposed Urea Cycle Disorders Guidelines

Book chapter published in 2014 by Johannes Häberle, Martina Huemer ORCID
This paper is available in a repository.
This paper is available in a repository.

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Abstract

Background: Implementation of guidelines and assessment of their adaptation is not an extensively investigated process in the field of rare diseases. However, whether targeted recipients are reached and willing and able to follow the recommendations has significant impact on the efficacy of guidelines. In 2012, a guideline for the management of urea cycle disorders (UCDs) has been published. We evaluate the efficacy of implementation, adaptation, and use of the UCD guidelines by applying different strategies.