Most people are familiar with the concept of a registry, either having created one for a wedding or new baby or selected a gift from one for a bride or groom. These types of registries are well-organized lists of the gifts a person is hoping to receive. A registry study is similar: It is a well-organized set of questions. But instead of giving a gift, you give answers to the researchers' questions. In some cases, you also provide a blood or tumor sample that researchers can use in the future. This can help them identify biological markers that might, for example, provide information about a tumor's aggressiveness or the types of treatments it will respond to. The blood sample might also be used to identify new genetic mutations that increase or decrease breast cancer risk.

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A: Breast cancer survivorship is so phenomenally good, and there are many women who can hope to live out their natural lifespan. If you've beaten a life threatening disease and then develop lymphedema, which affects your appearance and sense of wellbeing, it affects your quality of life. So it's important to figure out the best way to minimize the problem and optimize detection and treatment. That was our motivation for starting this registry and we hope that it will allow us to make an impact on this common problem.
     If we can determine that certain strategies reduce the intensity of lymphedema or the amount of care that is required, that would be an impetus for doctors to adopt those strategies. Also, by asking questions about the treatments received, we hope to be able to tease out the impact of breast cancer from the impact of lymphedema. Currently, all of this is very poorly understood.