1. Standardizing Care for Huntington's Disease: The Development of an openEHR Template for Motor Symptoms.
- Author
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Duque-Fernandes, Ana and Vieira-Marques, Pedro
- Subjects
HUNTINGTON disease ,MEDICAL personnel ,SYMPTOMS ,PHYSICIAN adherence ,DEEP brain stimulation ,NEURODEGENERATION ,MOTORS - Abstract
Huntington's disease (HD) is a rare yet debilitating neurodegenerative disorder originating from an increase in CAG repeats within the HTT gene. Despite ongoing research, a curative treatment for HD remains elusive, with current therapeutic strategies primarily targeting symptom management. Among the spectrum of HD symptoms, motor impairments are often the most obvious and disabling. To standardize treatment regimens and enhance patient care and quality of life, global evidence-based Clinical Practice Guidelines (CPGs) have been published to reduce variations in care. The integration of these guidelines into clinical information systems could significantly improve physician adherence to them, thereby optimizing patient outcomes. This study aims to develop an openEHR template specifically designed to represent recommendations for managing Huntington's motor symptoms, contributing to standardized care delivery, and enabling the seamless exchange of treatment information among different healthcare providers involved in the management of HD. We assessed the International Guidelines for the Treatment of Huntington's Disease commissioned by the European Huntington's Disease Network (EHDN) and selected the most representative variables regarding the HD motor symptoms. The openEHR template development followed the methodological guidance of the openEHR data modeling approach ('odma'). A total of 101 data items were extracted from the guideline section related to motor symptoms. After the classification and merging of these data elements, six domain concepts were organized for the motor symptom's treatment of Huntington's disease. This study successfully developed an openEHR template for managing Huntington's disease motor symptoms. These advancements have the potential to enhance treatment outcomes and transform care delivery for Huntington's disease. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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