Abstract
Different countries use a variety of methods to manage the newborn screening data. In this study, we aimed to compare the experiences of the selected countries to propose a framework for managing the newborn screening data in Iran. In this comparative study, data were collected using electronic databases and the official website of the Department of Health in America, England and Australia. Data related to the process of newborn screening in Iran were collected using an open-ended questionnaire and reviewing the published documents. In this study, a framework for newborn screening data management was proposed which consisted of six main areas, namely; objectives, involved organisations, data elements, data collection processes, data classification systems and the methods of controlling data quality. The framework suggested in this study can help to re-organise the process of newborn screening with more focus on data management. These data can be used in conducting research and setting strategies for improving the quality of child health in the country.
Highlights
Different countries use a variety of methods to manage the newborn screening data
As the country is moving towards using electronic health records and a well-structured paper-based record can be a basis for the future electronic health records, this study aimed to compare the experiences of the selected countries (America, England and Australia) to propose a framework for managing newborn screening data in Iran
A questionnaire consisted of eight open-ended questions was distributed among 20 participants who worked in the field of newborn screening
Summary
Different countries use a variety of methods to manage the newborn screening data. In this study, we aimed to compare the experiences of the selected countries to propose a framework for managing the newborn screening data in Iran. Conclusion The framework suggested in this study can help to re-organise the process of newborn screening with more focus on data management These data can be used in conducting research and setting strategies for improving the quality of child health in the country. Since children are at risk of various diseases, such an investment may largely improve their health status and as a result, the community will move towards a healthier future.[1,2] The newborn screening is one of the approaches that have prevented a number of diseases and congenital disorders in the past 40 years.[3,4] This approach aims to identify a disease or a disorder before causing irreparable damages. Despite the importance of the newborn screening programme, the developing countries have faced a number of challenges, such as medical, technical and logistical support when implementing the programme and as a result, it has not been conducted in all areas.[6,7]
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