The Development of a Minimum Data Set for an Infertility Registry

Effective decision making in the healthcare setting is highly dependent on access to reliable and robust data and information. A minimum data set is a standard assessment instrument that is used during the data collection process to ensure that decision makers have access to a consistent set of information. The objective of the current study was to develop a minimum data set for infertility patients that can be employed as the basis for an infertility registry in Iran. A systematic review resulted in the identification of 2,501 articles and 17 patient forms from infertility centers that were relevant to the study objectives. Of these, 10 articles met all the inclusion and exclusion criteria, and 232 data elements were subsequently extracted from these papers. The data elements were classified by three experts and validated via two rounds of a Delphi technique. The accessibility of the data elements was then evaluated during a focus group discussion. Finally, 146 data elements were selected as the minimum data set. The proposed minimum data set could provide the basis for standardization of infertility treatments. Synchronizing the various data sets that are currently in use will be necessary to allow sharing of data across infertility registries