A Framework for Neonatal Prematurity Information System Development Based on a Systematic Review on Current Registries: An Original Research

Registries are regarded as a just valuable fount of data on determining neonates suffering prematurity or low birth weight (LBW), ameliorating provided care, and developing studies. This study aimed to probe the studies, including premature infants’ registries, adapt the needed minimum data set, and provide an offered framework for premature infants’ registries. For this descriptive study, electronic databases including PubMed, Scopus, Web of Science, ProQuest, and Embase/Medline were searched. In addition, a review of gray literature was undertaken to identify relevant studies in English on current registries and databases. Screening of titles, abstracts, and full texts was conducted independently based on PRISMA guidelines. The basic registry information, scope, registry type, data source, the purpose of the registry, and important variables were extracted and analyzed. Fifty-six papers were qualified and contained in the process that presented 51 systems and databases linked in prematurity at the popular and government levels in 34 countries from 1963 to 2017. As a central model of the information management system and knowledge management, a prematurity registry framework was offered based on data, information, and knowledge structure.  To the best of our knowledge, this is a comprehensive study that has systematically reviewed prematurity-related registries. Since there are international standards to develop new registries, the proposed framework in this article can be beneficial too. This framework is essential not only to facilitate the prematurity registry design but also to help the collection of high-value clinical data necessary for the acquisition of better clinical knowledge.