A Rational Framework for Development Iranian Twin Registry: Lessons Learned from Developed Twin Registries
Background: Regarding technology advancement in health sciences and the possibility of recording and organizing a huge amount of data, registries in various clinical domains have been established. The specific genetic structure of twins has enabled researchers to find answers to role of genetics and environment in medical sciences. Thus, twin registries were developed across the world to support twin studies. The main objective of this study is devising a conceptual model for developing the
... developing the Iranian twin registry to ensure the success of this registry. Methods: In this descriptive and qualitative study, the combination of literature review, brainstorming, and focus group discussions were applied to develop a conceptual model of the twin registry. Based on our qualitative and thematic analysis, the workflow of information gathering and different data levels are described in this study. Results: According to the characteristics of established worldwide twin registries, the success factors in registry implementation were recognized. Moreover, based on our objectives, the hierarchical conceptual model of the registry was invented. The source of information, the different levels of data, and the information flow were determined based on this model. The workflow modeling of data gathering was represented through this survey to clarify the data collection and saving processes. Conclusion: Suggesting a conceptual model and standard framework for twin registry development at the national level based on the experiences of other countries could guide researchers in twin registries implementation efficiently. Moreover, the next steps of implementing a twin registry in a standardized and stepwise way are outlined in this project.