The Necessity of Using the Registry Systems for Primary Ovarian Insufficiency

Introduction Premature ovarian insufficiency (POI) is a condition characterized by the loss of ovarian function before the age of 40, resulting in female infertility. Currently, data related to POI is collected separately in infertility and research centers, and there is a lack of a comprehensive registry system for POI in Iran. This study aims to review measures taken in different countries to implement a POI registry system in order to design a system for recording this chronic and rare disease. Methods This study is a descriptive review conducted in 2023 without any time limitations. The study was conducted in two phases. In the first phase, relevant domestic and international databases, as well as the bibliographies of related papers, were searched using appropriate search strategies and keywords derived from MeSH terms. In the second phase, articles related to the POI registry system were reviewed and compared with those from other countries. Findings In this study, we identified 13 relevant systems from 12 countries based on an analysis of 60 studies. A total of 34 features were extracted from eight dependent and six independent POI registry systems. Conclusion Considering the crucial role of women in maintaining the health of the family and society, it is recommended by the Ministry of Health and Medical Education to establish a national POI registry system. The essential components of the POI registry system should include the formation of a multidisciplinary team to address the systemic nature of the disease, a comprehensive definition of POI, a minimum data set, and the provision of localized guidelines for identifying, recording, and reporting information.