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Twins - Twin Registries

genetic registry volunteer study disease

Twin studies can have several starting points. Some investigators begin simply by trying to identify twins who will volunteer to be part of a particular research study. Often twins are sought by advertising for twins with the particular disease of interest. This approach has the advantage of simplicity, as twins identify themselves to the research team.

However, twins who volunteer may differ in some important way from those who do not volunteer, and this could affect the conclusions drawn from the study. For example, MZ twins are more likely to volunteer, in general, than DZ twins are. This tendency to volunteer for twin studies among MZ twins is probably because being a twin is a more central part of the identity of MZ pairs than DZ pairs. Also, twins concordant for a particular disease are more likely to volunteer than those without the disease are. If both influences are at work in the same study, more concordant MZ twins than DZ twins may be identified, not because there is an actual difference in concordance between MZ and DZ twins (and thus a genetic effect at work), but because more concordant MZ twins volunteered for the study. If this pattern of volunteerism is mistaken to represent the true pattern of the disease in all twins, an inappropriate conclusion that the disease has genetic causes could result.

Other twin registries attempt to identify all twins within a particular population. One approach is the statewide or national twin registry. All twin births in the region are reported to a central registrar. This results in a more complete picture of all twin pairs in these populations. Examples include the statewide Virginia and Minnesota twin registries in the United States and many national twin registries, including those in the United Kingdom, Australia, the Scandinavian countries, Germany, Belgium, the Netherlands, Italy, and Sri Lanka.

Twin registries have also been assembled from among special populations. Examples in the United States are registries assembled from military records (the World War II Veteran Twins Registry and the Vietnam Era Twin Registry) and from Medicare files (the U.S. Registry of Elderly African-American Twins). In these registries, likely adult twins were identified by searching records to identify individuals with identical dates of birth, birthplaces, and surnames. These individuals were then contacted to verify whether they actually constituted a twin pair. Registries may also be established by identifying twin births within a health maintenance organization (such as the Kaiser Permanente Twin Cohort, in California).

Each registry varies in the amount of contact with registrants. In all, individual contact is strictly monitored to preserve the privacy of each twin. Every research proposal must be approved by a panel to assure the scientific value of the project, the justification for doing the study in twins, and to ensure that the privacy and safety of individual twins will be protected.

Twin registries can be useful starting points for investigating many questions about the genetic and environmental determinants of a trait. Records linkage studies involve no personal contact with the twins. Instead, information in the twin registry is "linked" electronically to information in another database, such as a national health insurance database or a cancer registry. In this way, twins with a particular health problem can be identified, and concordance estimates can be calculated. Similarly, information collected for each twin at registration can later be used to investigate certain kinds of questions without ever contacting the individual twins. On the other end of the spectrum, twins may be asked to volunteer for physical examinations, blood tests, radiological studies, or interviews. Depending on the questions asked, such studies may be useful for comparing concordance, or for identifying risk factors or modifying factors for a trait.

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