Avera Twin Register Growing Through Online Consenting and Survey Collection

Julie M. Kittelsrud*, Erik A. Ehli, Vikki Petersen, Tammy Jung, Jeffrey J. Beck, Noah Kallsen, Patricia Huizenga, Brittany Holm, Gareth E. Davies

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

The aim of the Avera Twin Register (ATR) is to establish a prospective longitudinal repository of twins, multiples, siblings and family members' biological samples to study environmental and genetic influences on health and disease. Also, it is our intention to contribute to international genome-wide association study (GWAS) twin consortia when appropriate sample size is achieved within the ATR. The ATR is young compared with existing registers and continues to collect a longitudinal repository of biological specimens, survey data and health information. Data and biological specimens were originally collected via face-to-face appointments or the postal department and consisted of paper-informed consents and questionnaires. Enrollment of the ATR began on May 18, 2016 and is located in Sioux Falls, South Dakota, a rural and frontier area in the Central United States with a regional population of approximately 880,000. The original target area for the ATR was South Dakota and the four surrounding states: Minnesota, Iowa, North Dakota and Nebraska. The ATR has found a need to expand that area based on twin and multiple siblings who live in various areas surrounding these states. A description of the state of the ATR today and its transition to online data collection and informed consent will be presented. The ATR collects longitudinal data on lifestyle, including diet and activity levels, aging, plus complex traits and diseases. All twins and multiples participating in the ATR are genotyped on the Illumina Global Screening Array and receive zygosity results.

Original languageEnglish
Pages (from-to)686-690
Number of pages5
JournalTwin Research and Human Genetics
Volume22
Issue number6
Early online date14 Oct 2019
DOIs
Publication statusPublished - Dec 2019

Bibliographical note

Special Issue: Twin family registries worldwide: An important resource for scientific research

Funding

The ATR is supported by Avera Health, Avera McKennan Hospital, and AIHG. The collaboration between the Netherlands and the Avera Twin Register arose through NIHM Grant: 1RC2MH089995-01: Genomics of Developmental Trajectories in Twins.

FundersFunder number
AIHG
Avera Health
Avera McKennan Hospital
Avera Twin Register
NIHM1RC2MH089995-01

    Keywords

    • genotyping
    • Global Screening Array
    • lifestyle
    • multiples
    • twin register
    • Twins

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