Twin Research Data Repository
One of our most important accomplishments for the UW Twin Registry has been the establishment of the data repository. This is an ongoing database in which epidemiological and biological information can be linked to better understand the genetics of illness or response to treatment. Soon after we began recruitment for the Registry, we realized that the brief initial survey provides useful but limited self-reported information regarding demographics, contact information, zygosity, and a select number of symptoms and health conditions. This information, however, would not allow us to truly understand the health status and health-related behaviors of the twins. In order to better examine genetic and environmental impact on health and illness, we needed more detailed objective and self-reported data along with biological samples (i.e., blood, saliva, buccal cells, urine) which would allow us to more fully describe our population of twins, as well as provide more information for future studies.
This additional data collection effort is what we call the in-person module. We ask all twins who agree to take part in a specific twin study also to complete the module. Although the data we collect in the module is separate from any required study procedures and is stored separately, the actual collection of the module data takes place following a study visit. The UW Twin Registry and not the individual investigators are the guardians of these data to facilitate their eventual broader use. At the present time, the module information is collected from twins who come into our offices personally. In the future, we hope to have the financial means to collect most elements of the module by mail from UW Twin Registry participants. These data, along with those collected from the initial survey will establish the most systematic and comprehensive repository of epidemiological and biological data on twins from a community-based registry in the United States.
Why is the Repository important?
Science is moving at an unprecedented pace. New discoveries and connections are announced daily. Each scientist, however, typically has narrow interests, strictly defined study aims, and a specialized field of expertise. In contrast, the information we collect in the module is broad and relevant to all twins. Therefore, we believe that this information will be extremely useful to investigators as new tests or markers for diseases are discovered, novel links are described (e.g., the recently publicized links between obesity and immune function, and cancer and sleep), and innovative collaborations are forged.