Research on the Quality of Cancer Care in Diverse Populations

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I Can Care

The Individualized Cancer Care Study

The overall goal of the study is to improve the quality of care for women with breast cancer. This study seeks to better understand how women with breast cancer and their doctors decide on a variety of test and treatment options based clinical and other factors. Women selected for the study are from the state of Georgia and Los Angeles County, California. Participants are mailed a survey about their breast cancer care experience and are asked to complete and return it by mail in a pre-paid envelope. After we get everyone’s survey back, we’ll put all the information together. The results from this study will be shared with the people who care most about women’s treatment for breast cancer, including researchers, clinicians, cancer patients, and patient advocacy groups. Researchers hope to use the information from this study to improve the quality of care that women with breast cancer receive.


General FAQs:

Who is funding the study?

The study is funded by the National Cancer Institute at the National Institutes of Health.

Who are the primary investigators?

How were women selected for participation?

Women were selected for participation through SEER, the Surveillance, Epidemiology, and End Results program. SEER is the leading source of information on cancer incidence in the United States and works to provide this information to reduce the burden of cancer among the population.

How many women are participating?

Ultimately, around 4,600 women will participate in the study, including 2300 from Georgia and 2300 from Los Angeles County.

How long does the study last?

We began sending surveys to eligible women in October 2013 and expect to continue until April 2015.


FAQs for Participants:


Who can I contact if I have a question?

What are my rights as a research subject and what will happen if I decide not to participate?

Taking part in this study is voluntary. You may choose not to be in this study. If you decide to be in this study, you are free to change your mind and stop at any time with no consequences. You will not lose any benefits to which you are entitled.

If you have questions about your rights while taking part in this study, or you have concerns or suggestions and you want to talk to someone other than the researchers about the study:

  • Los Angeles residents:
    Please contact the University of Southern California Institutional Review Board:
    Health Sciences Campus, General Hospital, Suite 4700, 1200 N. State St.
    Los Angeles, CA 90033
    323-223-2340
    irb@usc.edu
  • Georgia residents:
    Please contact the Emory University Institutional Review Board:
    1599 Clifton Rd NE, 5th Floor
    Atlanta, GA 30322
    404-712-0720
    irb@emory.edu

How did you get my name and contact information?

  • Los Angeles residents: Your name was obtained from the Los Angeles Cancer Surveillance Program, a member of the California Cancer Registry. This program was created by the California Legislature in response to public concern that not enough was being done to find the causes of and cures for cancer. Every cancer diagnosed in California is required by law to be reported to the California Department of Public Health, which is responsible for the registry. Information on individuals with cancer can only be released for research purposes to qualified researchers who have obtained approval for the study from a federally approved Committee for the Protection of Human Subjects and have agreed to maintain the confidentiality of the information they collect.
  • Georgia residents: Your name was obtained from the Georgia Center for Cancer Statistics. This organization serves as the agent of the state of Georgia Department of Public Health for conducting cancer surveillance. Every cancer diagnosed in Georgia is required by law to be reported to the Georgia Cancer Registry. This registry was designed to track the cancer burden among Georgia residents and to support studies about cancer to improve public health. Information on individuals with cancer can only be released for research purposes to qualified researchers who have obtained approval for the study from a federally approved Committee for the Protection of Human Subjects and have agreed to maintain the confidentiality of the information they collect.

What if I don't want to answer a question?

If you do not want to answer a certain question, you may write “skip” next to it.

How will you keep my information confidential?

All of the information in the survey is kept strictly confidential. Your name does not appear anywhere on the survey and individual patients can never be identified from any results of the study. We also keep surveys in locked file cabinets and computer files protected by passwords.


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