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Identification and Validation of Requirements for a Registry System of Children's Developmental Motor Disorders in
Elahe Gozali1, Reza Safdari1, Marjan Ghazisaeedi1
1Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran.
Insights
This study identified essential requirements for an electronic registry system for children's developmental motor disorders (DMDs) in Iran. The findings will aid in establishing systems for better patient identification and disease management.
Area of Science:
- Medical Informatics
- Pediatric Neurology
- Public Health
Background:
- Children's developmental motor disorders (DMDs) remain a significant challenge in medical sciences.
- Electronic registry systems are crucial for identifying patients and managing DMDs effectively.
- Iran faces challenges in standardizing information management for DMDs due to a lack of comprehensive registry systems.
Purpose of the Study:
- To identify and validate the requirements for an electronic registry system for children's DMDs in Iran.
- To establish a foundation for designing and implementing effective information management systems for pediatric motor disorders.
Main Methods:
- A descriptive-analytical study was conducted in three stages: literature review, questionnaire development, and expert validation.
- Requirements were identified through literature review and refined using a questionnaire.
- 22 specialists validated the identified requirements for the electronic registry system.
Main Results:
- The study identified 24 demographic, 87 clinical data elements, and 28 technical capabilities for the DMD registry system.
- Specific demographic data elements like "family history of motor disorders" and "drug allergy" were deemed non-essential for the registry.
- The findings provide a structured set of requirements for developing a comprehensive electronic registry.
Conclusions:
- Standardized information recording for children's DMDs is lacking in developing countries like Iran.
- The study's findings offer a blueprint for designing and implementing essential information registry systems for pediatric DMDs.
- Further research is recommended to explore the necessary infrastructure for developing and deploying such registry systems.
Background:
Despite recent advances in the field of medical sciences, children's developmental motor disorders (DMDs) are considered as one of the challenges in this area. Establishment of electronic systems for recording and monitoring children's DMDs can play an effective role in identifying patients and reducing the costs and consequences of the disease management. The aim of this study was to identify and validate the requirements for a registry system of children's DMDs in Iran.
Methods:
The present descriptive-analytical study was performed in three main stages. In the first step, the literature was reviewed to identify the requirements. In the second stage, the information obtained from the literature review was used to develop a questionnaire for validating and selecting the requirements for an electronic system of recording DMDs in infants. In the final stage, the requirements were validated by selected experts (22 specialists). Data were analyzed using SPSS 20 software (IBM Corporation, New York, United States).
Results:
According to findings, the requirements of a registry system for children's DMDs were identified in three areas of demographic (24 data elements), clinical data (87 data elements), and technical (28 capabilities). In the demographic section, data elements of "family history of motor disorders" (mean = 1.18) and "drug allergy" (mean = 2.9) gained an average score of < 2.5 and therefore were not selected as data elements necessary for the registry system of data recording and monitoring children's DMDs.
Conclusion:
In such developing countries as Iran, standard information recording and management is not properly done due to a large amount of information and the lack of comprehensive information registry systems. The findings of this study can help to design and establish information registry systems in the field of children's DMDs. Based on the findings of this research, it is recommended that future research be done to explore infrastructures necessary for providing a suitable platform to design and implement information registry systems in the field of children's DMDs.
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