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

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  • Hamidreza Abtahi
  • Marsa Gholamzadeh
  • Leila Shahmoradi
  • Mamak Shariat

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.

Suggested Citation

  • Hamidreza Abtahi & Marsa Gholamzadeh & Leila Shahmoradi & Mamak Shariat, 2021. "An information‐based framework for development national twin registry: Scoping review and focus group discussion," International Journal of Health Planning and Management, Wiley Blackwell, vol. 36(5), pages 1423-1444, September.
  • Handle: RePEc:bla:ijhplm:v:36:y:2021:i:5:p:1423-1444
    DOI: 10.1002/hpm.3256
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    1. Alessandro Liberati & Douglas G Altman & Jennifer Tetzlaff & Cynthia Mulrow & Peter C Gøtzsche & John P A Ioannidis & Mike Clarke & P J Devereaux & Jos Kleijnen & David Moher, 2009. "The PRISMA Statement for Reporting Systematic Reviews and Meta-Analyses of Studies That Evaluate Health Care Interventions: Explanation and Elaboration," PLOS Medicine, Public Library of Science, vol. 6(7), pages 1-28, July.
    2. Jeroen Smits & Christiaan Monden, 2011. "Twinning across the Developing World," PLOS ONE, Public Library of Science, vol. 6(9), pages 1-5, September.
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