Cancer Registry Studies: At Least One for Everyone

December 9, 2014 at 4:53 am Leave a comment

clipboard2When thinking about breast cancer research, clinical trials investigating new drug treatments are often the first thing that comes to mind. But there is another type of research study that tends to get much less attention: breast cancer registry studies.

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.

A registry study may require you to complete one questionnaire and give one blood sample. Or it may involve completing a series of questionnaires over time. Registry studies that follow people over time allow researchers to identify possible correlations between an action (like exercise) and an outcome (like breast cancer recurrence). Some registry studies are conducted solely online; others require enrollment at a research site. Some registries are established by university- or government-affiliated researchers, while others are organized by non-profits. All provide opportunities to participate in a research study that can advance our understanding of breast cancer.

The Cancer Experience Registry is an example of an online registry study conducted by a nonprofit—in this case the Cancer Support Community. This registry is open to anyone who has had a cancer diagnosis, whether they were diagnosed a week ago, are currently undergoing treatment, or are a long-term survivor. Researchers intend to use the information collected through the Cancer Experience Registry to develop programs that address the emotional and social needs of cancer patients and survivors. Individuals who enroll in the registry are asked questions about their diagnoses, overall health, and the impact cancer and its treatments have had on them physically, financially, socially, and emotionally. By conducting the registry trial completely online, the Cancer Support Community is hoping to reach and glean information from a broad a range of cancer survivors.

The SystHERs Registry (Systematic Therapies for HER2+ Metastatic Breast Cancer Study) is an example of a registry that is enrolling patients at a research site—in this case, 100 research sites nationwide. A group of academic researchers started this registry in order to learn about how doctors in the “real world”—outside of clinical trials—are using the new HER2-targeted treatments in women with HER2+ metastatic breast cancer. The researchers are also asking questions about the side effects patients are developing and collecting information on how the tumor is responding to the treatment.

All of the registry trials listed on BCT can be found here.

Entry filed under: Breast Cancer Health Research. Tags: , .

Q&A With Dr. Stanley Rockson, Founder of the National Breast Cancer Lymphedema Registry Q & A with Dr. Gabriel Hortobagyi, MD

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