A Framework for Neonatal Prematurity Information System Development Based on a Systematic Review on Current...

Area of Science:

• Neonatal care and registry development
• Health informatics and data management
• Public health and epidemiology

Background:

• Registries are vital for data on premature and low birth weight (LBW) neonates.
• They aid in improving care and advancing research in neonatology.
• Standardized data collection is essential for effective registry utilization.

Purpose of the Study:

• To systematically review existing prematurity registries.
• To adapt a minimum data set for premature infant registries.
• To propose a framework for developing standardized prematurity registries.

Main Methods:

• A systematic review of electronic databases (PubMed, Scopus, Web of Science, etc.) and gray literature.
• Screening of titles, abstracts, and full texts following PRISMA guidelines.
• Extraction and analysis of registry information, scope, type, data source, purpose, and variables.

Main Results:

• Fifty-six papers were included, detailing 51 prematurity systems/databases across 34 countries (1963-2017).
• A prematurity registry framework was developed based on data, information, and knowledge structure.
• The framework serves as a central model for information and knowledge management.

Conclusions:

• This systematic review offers a comprehensive overview of prematurity-related registries.
• The proposed framework can guide the development of new registries adhering to international standards.
• It facilitates high-value clinical data collection for enhanced clinical knowledge and improved neonatal outcomes.