Establishing a Twin Register: An Invaluable Resource for (Behavior) Genetic, Epidemiological, Biomarker, and 'Omics' Studies

Veronika V. Odintsova, Gonneke Willemsen, Conor V. Dolan, Jouke Jan Hottenga, Nicholas G. Martin, P. Eline Slagboom, Juan R. Ordoñana, Dorret I. Boomsma*

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

Twin registers are wonderful research resources for research applications in medical and behavioral genetics, epidemiology, psychology, molecular genetics, and other areas of research. New registers continue to be launched all over the world as researchers from different disciplines recognize the potential to boost and widen their research agenda. In this article, we discuss multiple aspects that need to be taken into account when initiating a register, from its preliminary sketch to its actual development. This encompasses aspects related to the strategic planning and key elements of research designs, promotion and management of a twin register, including recruitment and retaining of twins and family members of twins, phenotyping, database organization, and collaborations between registers. We also present information on questions unique to twin registers and twin-biobanks, such as the assessment of zygosity by SNP arrays, the design of (biomarker) studies involving related participants, and the analyses of clustered data. Altogether, we provide a number of basic guidelines and recommendations for reflection when planning a twin register.

Original languageEnglish
Pages (from-to)239-252
Number of pages14
JournalTwin Research and Human Genetics
Volume21
Issue number3
Early online date10 May 2018
DOIs
Publication statusPublished - Jun 2018

Keywords

  • recruitment
  • twin register
  • twin research
  • zygosity determination

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