Neonatal abstinence syndrome: a systematic review of current databases and registries

Abstract

Objectives Registries are considered as rich sources of data for determination of infants with neonatal abstinence syndrome (NAS), the improvement of provided care and research. The aims of this study were: (1) to investigate the existing studies including NAS registries, (2) to identify and extract the required data elements. Methods The following electronic databases were searched: PubMed, Scopus, Web of Science, ProQuest, Embase/Medline, and Psych Info. In addition, a review of gray literature was undertaken to identify relevant studies in English covering the period from 1 January 2009 to 1 November 2018 including registries and databases. Screening of titles, abstracts, and full-texts were conducted independently by two researchers based on PRISMA guidelines. The basic registry information, scope, registry type, data source, the purpose of registry, important variables were extracted and analyzed. Results Twenty-five articles were eligible and included in the review; they reported 37 registries and databases related to NAS at the national and state levels in 11 countries from 1876 to 2013. We proposed a NAS registry design framework based on well-known data-information-knowledge (DIK) structure due to Ackoff’s DIK hierarchy has a defined role as a central model of information systems, information management, and knowledge management. Conclusions To the best of our knowledge, this is the first study which has systematically reviewed NAS-related registries. Since there are no international standards to develop new NAS registries, the proposed framework in this article can be beneficial. This framework is essential not only to facilitate the NAS registry design but also to help the collection of high-value clinical data necessary for the acquisition of better clinical knowledge.