About the Registry
The Breast Cancer Registry of Greater Cincinnati (BCRGC) is a local program designed to obtain information from and about women and men diagnosed with breast cancer.
The Registry is not a clinical trial. There are no treatments or testing of drugs. Any woman or man ever diagnosed with breast cancer is eligible to enroll in the Registry.
The purpose of the Registry is to support research about the causes of breast cancer, a crucial first step in prevention. The Registry supports research studies that:
- Improve knowledge about the occurrence of breast cancer in Greater Cincinnati
- Help identify factors (environmental, lifestyle, genetic) that may make people more susceptible to breast cancer
- Improve health education, prevention and public policy regarding breast cancer
The Registry is operated by researchers in the Department of Environmental Health at the University of Cincinnati College of Medicine experienced in cancer registries and epidemiologic research. The Registry Advisory Board consists of representatives from the Breast Cancer Alliance of Greater Cincinnati, Patterns Inc., Pink Ribbon Girls, Sisters Network Cincinnati and other service providers. In addition, persons with expertise in breast cancer treatment, screening and law voluntarily serve on the Board.
Frequently Asked Questions
1. What is a cancer registry?
A cancer registry is a database (file) of information about persons with a specific disease like breast cancer.
2. I’ve heard that Ohio, Kentucky and Indiana have statewide cancer registries? Why would we need another registry in the Cincinnati area?
State cancer registries exist in Ohio, Kentucky and Indiana, but do not meet the needs of epidemiology studies. (Epidemiology is the study of the occurrence and cause of disease.)
- These State registries have not allowed researchers to obtain names and addresses of persons in the registries, so that they could be invited to participate in questionnaire studies of cancer.
- State cancer registries do not include information about family history (data necessary for genetic epidemiology studies).
Currently, Greater Cincinnati does not have a breast cancer registry that can be used to study the occurrence of breast cancer in our community. To learn more about the occurrence of breast cancer in our community, it is important to collect information from people with the disease.
3. Who is eligible to enroll in the Registry?
Any person, male or female, who has been diagnosed with breast cancer is eligible to provide information to the Registry. Individuals who have ever been diagnosed with any type of breast cancer, regardless of the time since diagnosis/treatment, are referred to as breast cancer survivors. Persons who currently are in treatment are survivors.
4. What do I need to do to enroll?
You become a member of the Breast Cancer Registry when you sign a consent and provide information on a questionnaire, which should take about 15 minutes to complete.
5. My friend, who is a survivor, would like information about the Registry. Where can she obtain it?
Please tell her that she may obtain a breast Cancer Registry packet by calling call (513) 558-0559 and provide her name and mailing address.
6. Is the Registry a research study?
The Registry is not a study in itself, but a resource for future studies.
7. Will I be asked to participate in research studies?
In the future you may be invited to participate in a questionnaire or survey study, or to provide a blood sample. If you are eligible for a specific study that has been approved by the Registry, you will be sent a letter, asking for your permission for the Registry to give your name and address to the researchers conducting the study. If you give your permission, researchers may contact you about their research plan. You then decide whether to participate in that study. If you decide to participate in their study, you will sign a separate consent for that study.
The Registry also will send you periodic newsletters with reports of statistics from the Registry data, updates on use of the Registry by researchers, and other information of interest to persons with breast cancer.
8. For what kind of research studies will the Registry be used?
The Registry is designed primarily for studies of environmental or behavioral factors that are related to breast cancer. The Registry is sponsored by the University of Cincinnati Department of Environmental Health. We anticipate requests for assisting researchers in recruiting survivors for traditional epidemiology studies which investigate the roles of toxins, diet, alcohol, geographical location, etc. in breast cancer. In time, studies of genetic susceptibility and molecular epidemiology also may be supported.
The Registry also will be useful to researchers who are interested in behavioral factors such as those that influence return to work after being treated for the disease, or that influence survival. Researchers may apply to access the Registry for studies to assess health education, services and/or public policy.
9. What is the approval process for scientists who want to use the Registry?
Scientists desiring to use Registry information will have to first apply to the Registry Advisory Board, and provide information about their research questions, methods of recruitment, and communication with potential study participants. Our bylaws state that only qualified scientists, researching possible causes of breast cancer, breast health/cancer services and survivorship issues may be approved. Applications first are reviewed by a small committee of scientists (appointed by the Board) and breast cancer advocates. The entire Registry Board also reviews the application and provides the final approval. All research studies supported by the Registry also must be approved by an Institutional Review Board, to ensure protection of data and individual rights. Research projects related to legal proceedings or conducted by insurance companies will not qualify for use of Registry information.
10. Will the Breast Cancer Registry be used to recruit for clinical trials?
The Registry information will not be used for recruitment for clinical trials, since that recruitment is best accomplished by discussion between a patient and her/his physician.