Improving Clinical Documentation of Rare Neuromuscular Diseases: Development of a Standardised Information Model.
Stud Health Technol Inform
; 316: 1418-1419, 2024 Aug 22.
Article
in En
| MEDLINE
| ID: mdl-39176646
ABSTRACT
Rare neuromuscular diseases (NMDs) encompass various disorders of the nervous system and skeletal muscles, and present intricate challenges in diagnosis, treatment, and research due to their low prevalence and often diverse multisystemic manifestations. Leveraging collected patient data for secondary use and analysis holds promise for advancing medical understanding in this field. However, a certain level of data quality is a prerequisite for the methods that can be used to analyze data. The heterogeneous nature of NMDs poses a significant obstacle to the creation of standardized documentation, as there are still many challenges to accurate diagnosis and many discrepancies in the diagnostic process between different countries. This paper proposes the development of an information model tailored to NMDs, aiming to augment visibility, address deficiencies in documentation, and facilitate comprehensive analysis and research endeavors. By providing a structured framework, this model seeks to propel advancements in understanding and managing NMD, ultimately benefiting patients and healthcare providers worldwide.
Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Rare Diseases
/
Documentation
/
Neuromuscular Diseases
Limits:
Humans
Language:
En
Journal:
Stud Health Technol Inform
Journal subject:
INFORMATICA MEDICA
/
PESQUISA EM SERVICOS DE SAUDE
Year:
2024
Document type:
Article
Affiliation country:
Germany
Country of publication:
Netherlands