The iCanCare Follow-Up Study
In 2012, CanSORT received a $13 million program award from the National Cancer Institute to study the challenges of individualizing treatments for patients with breast cancer. A key part of this program was the Individualized Cancer Care Study (iCanCare Study). We surveyed over 5000 women newly diagnosed with early-stage breast cancer in 2013-15 to better understand their experiences during their initial breast cancer treatment.
Recently, CanSORT received a Research Scholar Grant from the American Cancer Society to continue the iCanCare Study. The goal of the iCanCare Follow-up Study is to investigate disparities in the quality and delivery of survivorship care. A sample of women who participated in the baseline iCanCare study will be surveyed again about the care they are receiving six years post-diagnosis.
Individual participants cannot be identified in the study data, and survey responses are never shared between participants and their doctors.
Below are some frequently-asked questions about the baseline iCanCare Study and the current iCanCare Follow-Up Study. Please click on each topic to learn more.
Frequently Asked Questions
Who is funding the study?
The baseline study (2013-2015) was funded by the National Cancer Institute at the National Institutes of Health. The follow-up study (six years post-diagnosis) has been funded by the American Cancer Society.
Who are the primary investigators?
- Lauren P. Wallner, PhD, MPH (Principal Investigator) – the University of Michigan
- Steven J. Katz, MD, MPH – the University of Michigan
- Sarah T. Hawley, PhD, MPH – the University of Michigan
- Archana Radhakrishnan, MD, MHS – the University of Michigan
- Allison W. Kurian, MD, MSc – Stanford University
- Reshma Jagsi, MD, DPhil – the University of Michigan
- Ann S. Hamilton, PhD, MA – the University of Southern California
- Kevin C. Ward, PhD, MPH – Emory University
How are women selected for participation?
We are surveying the same women who participated in the baseline survey. 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?
We received 2,502 surveys from women in Georgia and Los Angeles County who participated in the baseline study. For the follow-up study, we are sending out surveys to these 2,502 women.
What are participants asked to do?
Selected participants are mailed a survey about their breast cancer care experience and are asked to complete it online via Qualtrics (preferred due to COVID-19) or return 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 survivorship care that women with breast cancer receive.
How long does the study last?
We sent baseline surveys between October 2013 and July 2015 to eligible women diagnosed with breast cancer. The follow-up survey mailout will begin in February 2021.
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 initially 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 initially 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.
Will my doctors know that I am participating in this study?
No. We never share the names or individual survey responses of participating women with their doctors. Your survey responses are kept completely confidential and are combined with the responses of other patients.
