An information-based framework for development national twin registry: Scoping review and focus group discussion.

ABSTRACT

BACKGROUND: Registries in various clinical domains have been established in the last decades. The specific genetic structure of twins has enabled researchers to find answers to the role of genetics and the environment in medical sciences. Thus, twin registries were developed across the world to support twin studies. Our main objective was to devise a conceptual model for developing the national twin registry to ensure the success of this registry. METHODS: In this descriptive and qualitative study, the combination of literature review and focus group discussions was applied to achieve suitable models for developing a national twin registry based on lessons learned from founded registries. The qualitative synthesis and reporting results were conducted based on the COREQ checklist. RESULTS: According to a systematic literature review, the characteristics and employed strategies employed by established twin registries were recognized. Moreover, based on our objectives, suitable models for registry development were defined. The source of information, the different levels of data, and the information flow were determined based on this model. CONCLUSION: Suggesting a conceptual framework for twin registry development at the national level based on the experiences of other countries could contribute to a greater understanding of twin registry implementation efficiently.