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University of Washington Twin Registry: Construction and Characteristics of a Community-Based Twin Registry

Published online by Cambridge University Press:  21 February 2012

Niloofar Afari
Affiliation:
Department of Psychiatry, University of California, San Diego, and San Diego VA Healthcare System, San Diego, California, United States of America; Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, United States of America.
Carolyn Noonan
Affiliation:
Department of Medicine, University of Washington School of Medicine, Seattle, Washington, United States of America.
Jack Goldberg
Affiliation:
Department of Epidemiology, University of Washington and Vietnam Era Twin Registry, Seattle, Washington, United States of America.
Karen Edwards
Affiliation:
School of Public Health, University of Washington Seattle, Washington, United States of America.
Kiran Gadepalli
Affiliation:
Department of Medicine, University of Washington School of Medicine, Seattle, Washington, United States of America.
Bethany Osterman
Affiliation:
Department of Medicine, University of Washington School of Medicine, Seattle, Washington, United States of America.
Cynthia Evanoff
Affiliation:
Department of Medicine, University of Washington School of Medicine, Seattle, Washington, United States of America; Dendreon Corporation, Seattle, Washington, United States of America.
Dedra Buchwald*
Affiliation:
Department of Medicine, University of Washington School of Medicine, Seattle, Washington, United States of America. [email protected]
*
*Address for correspondence: Dedra Buchwald, University of Washington, Harborview Medical Center, 325 9th Avenue, Box 359780, Seattle, Washington 98104, USA.

Abstract

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The University of Washington Twin Registry is a community-based registry of twins identified from the Washington State Department of Licensing. A fortuitous quirk in the Washington State drivers' license and identification number assignment, and collaborative Washington State laws, permitted us to build a statewide registry. Since obtaining approval from the Washington State Attorney General, the Washington State Department of Licensing has provided us with information on over 26,000 newly licensed twins, and we continue to receive computerized records on approximately 80 new twins per week. The University of Washington Twin Registry is assembled by mailing each twin a recruitment packet that includes an information sheet, brochure, brief survey, and nominal gift. Once both members of a twin pair have completed the packet, the pair is enrolled in the registry. As of June 2006, 2287 adult twin pairs have enrolled in the registry; about one half of these are female–female pairs. Among all twins, the average age is 32 years. Based on self-report, 52% of twins are monozygotic, 42% are dizygotic, and zygosity on 6% cannot yet be determined. We also have instituted a clinical protocol for collecting additional data and DNA from all twins participating in research studies requiring an in-person visit. The registry has established policies and procedures to protect the confidentiality of twin data and guidelines for the use of the registry by investigators. Plans for the further growth of the University of Washington Twin Registry and its use are discussed.

Type
Articles/United States of America
Copyright
Copyright © Cambridge University Press 2006