Newborn screening data management: proposing a framework for Iran

Abstract

IntroductionDifferent 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.MethodsIn 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.ResultsIn 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.ConclusionThe 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.

Current Status of Newborn Bloodspot Screening Worldwide 2024: A Comprehensive Review of Recent Activities (2020–2023)

“…This study included the evaluation of reference ranges and screening cutoffs [ 1331 ]. To replace the current manual data management system, a framework for implementing electronic data management has been proposed based on literature reviews of the data management systems in the USA, UK, and Australia [ 1332 ]. A recent study compared and validated for the first time, two fluorometric methods for measuring α-glucosidase acid activity in dried bloodspot specimens (DBSs), with potential use for NBS and diagnosis of PD.…”