We welcome scientific researchers!
The interest of scientific researchers is welcomed – and they are encouraged to use the Registry for their studies. The Registry can be used as a research resource for a variety of types of studies. 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. The data collected with the four page enrollment form, and the alternate year questionnaire updates, can be used to answer some research questions. Now that we are collecting blood and paraffin-fixed tissue from Registry members, 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.
What is the function of the Advisory Board for the Registry?
The 12 members of the Registry Advisory Board (survivors, attorneys, physicians and researchers, some serving multiple roles) have assisted in designing the Registry forms and outreach efforts, and will continue to have input into all components of the Registry program. The Board approves policies and procedures for the Registry, including agreements with clinicians and researchers, and reviews requests from researchers for using the information in the Registry to recruit participants for research studies. Board members will not have access to names or information from individuals who have completed a Registry questionnaire.
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. The policies for research studies (using data or biospecimens or both) and the application form are available on the Application page. Our bylaws state that only the studies of 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.
If a researcher is approved, what is the procedure for contacting members of the Registry?
Registry procedures are different for different types of studies.
1) Some studies just use the data already in the Registry database to answer research questions. If this is the case, the researcher will be given a de-identified data file to use in conducting the research. (De-identified means that there are no names, addresses, or any other type of identifying information in the data file.)
2) If additional information from Registry members is needed for a study, eligible Registry members will be contacted by a letter from the Registry staff containing information about the study. If she/he provides written permission, the member’s name and address then will be forwarded to the qualified research scientist. The researcher will then send specific information about the study, and the Registry member decides about becoming part of that study.
3) Some studies require just biospecimens and some de-identified data from the Registry. The blood sample or slide of tissue given to the research will be de-identified as well as any accompanying data.