The Berlin Twin Registry has its focus on health research. It is operated as a private company, making twin studies available to academic institutions as well as commercial partners in the area of biotechnology and nutrition. Recruitment is based on invitation in the context of mass media coverage of scientific results. Phenotyping in the unselected twin subjects is directed toward intermediate phenotypes that can bear on common diseases. These phenotypes include proteomic approaches and gene expression. Some results are briefly described to give an impression of the range of research topics and related opportunities for retrospective and prospective collaborative research.
RecruitmentOur main recruitment strategy is to increase awareness of the twin registry's existence, along with the uniqueness of twins in research. This includes mass media advertisements for specific projects as well as publication of results in nonscientific newspapers. Motivation comes from demonstrating value for the general population as well as the individual benefits for the twins who participate. As an incentive for participation, we provide a free health checkup and free zygosity testing to twins. Aside from recruiting new twin pairs, keeping in contact with the current registry members is the second important part of maintaining a vibrant twin registry. While some twins will have been participating in ongoing studies, a larger portion may either not be suitable for the current projects or currently not available. It is crucial to keep ties and maintain involvement even if no immediate participation is possible. Regular newsletters and participation in local twin conventions are currently our main activities; extensions to our Web site for interaction between twins are under development.
Data and SamplesData storage is accomplished in a MySQL database with Web front end. This includes all personal as well as phenotypic information. A major part of our internal resources are devoted to the continuing database development.In most projects, complex measurement schemes are applied to balance effort in recruitment, time strain for the twins, and scientific value. As long as there is a balance between research interest and burden to the twins, combining studies is a suitable strategy to maximize the power of phenotyping in twins.Our twin sample is a self-selected adult sample with a wide age range (38 ± 15 years) (Table 1) without specific diseases; we have directed our phenotyping at intermediate traits and studied the influence of genetic variability on normal physiological variation. Direct measurements of traits like blood pressure were extended by functional assays to determine venous function (e.g., Brinsuk et al., 2004). Molecular phenotyping has been included in one study in which we counted the percentage of neutrophils expressing Proteinase 3 on their cell surface as a potential risk factor for Wegener granulomatosis, finding a heritability of 0.99