Newborn screening data management: Proposing a framework for Iran

Abstract

Introduction 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. Methods 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. Results 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. 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.