The Individualized Cancer Care Study
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CanSORT received a $13 million program award from the National Cancer Institute in 2012 to study the challenges of individualizing treatments for patients 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 on clinical and other factors.
The iCan Care study involves surveys of selected women diagnosed with early stage breast cancer in the state of Georgia and Los Angeles County, California and their treating doctors – surgeons, medical oncologists, and radiation oncologists. Women are surveyed approximately 6 months after their breast cancer diagnosis and asked about their decision making experiences regarding tests and treatments for their breast cancer. Doctors are surveyed about their general perspectives and recommendations regarding breast cancer tests and treatments.
Individual patients and doctors cannot be identified in the study data and survey responses are never shared between patients and doctors.
Below are some frequently-asked questions about the I Can Care Study. Please click on each topic to learn more.
Frequently Asked Questions
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?
- Steven Katz, MD, MPH; Reshma Jagsi, MD, DPhil; and Christopher Friese, RN, PhD, from the University of Michigan
- Kevin Ward, PhD, MPH, from Emory University
- Ann Hamilton, PhD, MA, from the University of Southern California
- Monica Morrow, MD, from Memorial Sloan-Kettering Cancer Center
- Allison Kurian, MD, MSc, from Stanford University
How are women selected for participation?
Women are 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 5,000 women will participate in the study, including 2,500 from Georgia and 2,500 from Los Angeles County.
What are participants asked to do?
Selected 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 individual surveys back, the study teams combine all data into protected datasets in which individual respondents cannot be identified.
What will the researchers do with the information from the study?
The results from this study will be shared with the people who care most about women’s treatment for breast cancer, including researchers, doctors, 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.
How long does the study last?
We began sending surveys to eligible women diagnosed with breast cancer in October 2013 and expect to continue until July 2015. We will survey doctors between February and July 2015.
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.
Doctors: You have been selected for this study because you treated one or more of the women in our study. Only doctors of the women in are study are being asked to participate.
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 and doctors can never be identified from any results of the study. We also keep surveys in locked file cabinets and computer files protected by passwords.
Which doctors are being asked to participate in the study?
Only doctors who have treated the women with breast cancer in our study are asked to participate.
What are doctors asked to do?
Doctors are mailed a general survey about their opinions on decision making and current diagnostic and treatment approaches in breast cancer. They are asked to complete this survey and return it by mail in a pre-paid envelope. After we get these surveys back, the study teams combine all data into protected datasets in which individual respondents cannot be identified.
Doctors are never asked about their treatment of specific patients.
Will my doctors know that I am participating in this study?
No. We never share the names of participating women with the doctors taking part in this study. In addition, we never share individual patient survey responses with the doctors. Your survey responses are kept completely confidential and are combined with the responses of other patients.