University of Washington Twin Registry: construction and characteristics of a community-based twin registry.
Afari N, Noonan C, Goldberg J, Edwards K, Gadepalli K, Osterman B, Evanoff C, Buchwald D
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, 2,287 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 MZ, 42% are DZ, and zygosity on 6% cannot yet be determined. We also have established 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.
University of Washington Twin Registry: construction and characteristics of a community-based twin registry. Twin Res Hum Genet. 2006; 9(6):1023-1029.