Identification and Validation of Requirements for a Registry System of Children's Developmental Motor Disorders in Iran

Abstract

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.

Designing and evaluating the children’s developmental motor disorders system: an experience from a developing country

“…According to the results, the requirements of the children's DMD registry system were identified in three areas, including demographic data elements (24 data elements), clinical data elements (87 data elements), and technical requirements (28 capabilities). Its results have been presented in the previous article [ 22 ]. Unified modeling language diagrams were used to model the system of registering and monitoring children's developmental motor disorders.…”

“…The present study was conducted as a project and in three phases. The first phase of this project and its results were published in the previous article [ 22 ]. An abstract of the first phase and other phases of the project is presented in the present study.…”

“…Data were analyzed using SPSS-20 software (IBM Corporation, New York, USA). The previous study presents this project phase in detail [ 22 ].…”

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