For Participants
The CBCS family of studies is growing, and our participants, advocates, research collaborators, and more have different questions and needs. Please explore this page to find questions to some of our most frequently asked questions or just to learn more about each part of this grand endeavor.
Frequently Asked Questions for CBCS3
Are you still enrolling new participants?
What are the results of this study so far?
How did we first contact participants?
It’s been so long since I was diagnosed with breast cancer. Why is my information important?
Who has been participating in this study?
Why were so many women needed?
Why was it so important that CBCS3 “oversampled” Black women?
What is the difference between this study and a clinical trial?
What is the timeline for participation? When will it end?
Are you still enrolling new participants?
CBCS3 closed enrollment in 2013. We have been follow-up with this remarkable group of breast cancer survivors ever since. The CBCS3 Team is extremely thankful for our participants’ dedication and generosity.
[return to top]What are the results of this study so far?
See our Results page for highlighted publications, as well as a comprehensive list of published articles that use data from all phases of CBCS. That’s over 230 peer-reviewed articles!
[return to top]How did we first contact participants?
By law, all newly diagnosed cancer cases are reported to the North Carolina Central Cancer Registry. The Registry provides researchers with some of this information if they meet certain requirements. CBCS researchers have been the beneficiaries of this service in 1993.
[return to top]It’s been so long since I was diagnosed with breast cancer. Why is my information still important?
Yes, it has been more than a decade since your initial diagnosis of breast cancer, and a lot has happened since then. But you should know you are part of one of the longest running groups of breast cancer survivors among all active studies. There’s no one else quite like you!
A cancer diagnosis has unknown long-term effects, and the risks of recurrence or a new diagnosis after 10 years are not well understood. With more women than ever living longer than ever, you’re generosity of spirit and time is providing the data that doctors and researchers need to diagnose and treat other survivors like you.
[return to top]Who has been participating in this study?
About 3,000 women of all races with breast cancer living in 44 counties of North Carolina have been part of Phase 3. By now, participants have moved across the United States (and some beyond).
This is on top of the 4,000 women who already participated in the 1st two phases of study between 1993 and 2004.
[return to top]Why were so many women needed?
Breast cancer is a disease that affects all kinds of women, but there are important and often poorly understood differences by race and age-group. For this reason, we selected approximately 750 women from each of four age and race categories: Black women aged 20-49, Black women aged 50 or older, non-Black women aged 20-49, and non-Black women aged 50 or older.
[return to top]Why is it so important that CBCS3 “oversampled” Black women?
“Oversampling” means recruiting participants from a larger percentage of a group of people than they appear in the overall population. In our case, 50% of those enrolled in CBCS3 identified themselves as Black or African American.
This is an important technique. CBCS researchers can gain a better understanding of the experiences of Black women with breast cancer and perhaps to see differences within Black women and differences compared to non-Black women that would have otherwise gone unnoticed. CBCS’s continued success comes from its participants, who graciously agreed to share their lives with us.
[return to top]What is the difference between this study and a clinical trial?
Unlike a clinical trial, we have never asked anyone to take drugs or medicine of any kind, and we will not treat your breast cancer. In CBCS, your participation should never have changed your relationship with your doctors, the treatment they recommended, or the medical care you received.
[return to top]What is the timeline for participation? When will it end?
Participants’ involvement has proceeded according to the approximate timeline below. Every 9-12 months, CBCS staff has contacted participants. Oftentimes, this has been for a short follow-up survey tracking their health and well-being, but sometimes it has been just a mailed newsletter to keep in touch and to let participants know about this study and its progress. See the image below for details.
The study plan is to continue staying in contact with willing participants for 15 years after their initial diagnosis.
(Click to enlarge image.)
Frequently Asked Questions for CBCS4
Are you still enrolling new participants?
Why is my information important?
What does it mean to participate?
What will I be expected to do if I participate?
What type of questions will I be asked during the home visit?
How long will the home visit last?
Do you have to come to my home?
Why is it so important that CBCS4 is “oversampling” Black women?
What other groups of people are CBCS4 interested in working with?
Are you still enrolling new participants?
Yes!
[return to top]Can I enroll?
Enrollment is by invitation only. We are only allowed to enroll someone if the North Carolina Central Cancer Registry has given the study their name. If you have received a letter from the study or a phone call from a Recruitment Specialist, you have been invited.
[return to top]Why am I important?
An invitation to participate means that you were specially selected to represent women in North Carolina of your race and age group. Therefore, once you have been asked to participate, no one else can fill your place without affecting the quality of the study.
[return to top]Why is my information important?
The best way to learn what causes a disease is to study people who already have it. CBCS has never been a treatment study, so it isn’t likely this research will help participants directly. Nevertheless, your information may help identify some of the causes of breast cancer, determine which treatments are most effective, and shine a spotlight on what life after a breast cancer diagnosis is like. It is our hope that this information will reduce breast cancer occurrence and improve treatment and survival in future generations of women. We’re hopeful too that the information we gather in our yearly follow-ups will help identify risks for breast cancer recurrence and for long-term effects of breast cancer treatment.
[return to top]What does it mean to participate?
Our participants are part of the largest study of breast cancer in the South. CBCS3 and CBCS4 are among the first studies to include major participation by Black women as participants. This sheds much needed light on their experiences. CBCS has also been the first study to look at different subtypes of breast cancer.
[return to top]What will I be expected to do if I participate?
We will ask you to complete an in-home visit which will include an interview, simple body measurements, and a small blood draw with a trained Nurse-Interviewer. (If you prefer, a saliva sample can be collected instead.) At that visit, we will also request your permission to obtain your medical records from your breast cancer diagnosis and treatment. In addition, we will ask your permission to obtain tissue from your breast cancer stored at a hospital, lab, or doctor’s office.
We plan to follow-up with study participants every year or for up to 15 years. Some years, trained Callers will reach out by telephone to check in with you and to conduct a short survey. Other years we will send a newsletter to keep in touch, but there won’t be a telephone interview.
[return to top]What type of questions will I be asked during the home visit?
The survey includes questions about your family history of cancer, social and demographic factors, menstrual and pregnancy history, medical history, and aspects of daily life.
[return to top]How long will the home visit last?
The home visit can be scheduled at your convenience and will take approximately 3 hours to complete. We will schedule it at a time and day that is most convenient for you.
[return to top]Do you have to come to my home?
No, we don’t, but we do like to come to you so you are in a place where you’re comfortable. If that’s not where you reside, we’re happy to work with you to find a safe, private location that’s convenient for you.
[return to top]Why is it so important that CBCS4 is “oversampling” Black women?
“Oversampling” means recruiting participants from a larger percentage of a group of people than they appear in the overall population. In our case, 50% of those enrolled in CBCS3 identified themselves as Black or African American.
This is an important technique. CBCS researchers can gain a better understanding of the experiences of Black women with breast cancer and perhaps to see differences within Black women and differences compared to non-Black women that would have otherwise gone unnoticed. CBCS’s continued success comes from its participants, who graciously agreed to share their lives with us.
[return to top]What other groups of people are CBCS4 interested in working with?
We are interested in women under age 50 and in residents from North Carolina’s rural counties. We know that younger women tend to have worse outcomes, and including more young women will help us understand why this occurs. Similarly, outcomes are worse for rural populations, and including more will shine light on this important group.
[return to top]Frequently Asked Questions for BBD Project
THIS SECTION IS UNDER CONSTRUCTION. PLEASE CHECK BACK SOON!
[return to top]Frequently Asked Questions for the Oral History Project
Are you still enrolling new participants?
How might this benefit others?
What will be done with my interview?
How are you using the results in research and treatment?
Are you still enrolling new participants?
Yes, we are. Any breast cancer survivor from North Carolina is eligible to participate. Use the Contact page on this website, and a Recruitment Specialist will reach out to you.
[return to top]What will be asked of you?>
You would be asked to talk with a study team member for about 1-3 hours. During this time, we hope to learn about what you think about health, your cancer diagnosis and treatment experience, and how you felt about your doctors during your initial treatment.
[return to top]How does this benefit you?
There is no direct benefit to you from taking part. The goal of this is to have conversations and learn more about individual stories. You will receive a $50 gift card to thank you for your time.
[return to top]How might this benefit others?
We think learning more details about your story may help us know how to better care for other women that are diagnosed with cancer in the future.
[return to top]What will be done with my interview?
After we conduct the interview, we will be transcribing the interview into text, and you will have the chance to review it. With your permission, we will add your interview to UNC’s Southern Oral History Project repository, which will give the opportunity for your story to be shared with the community. We will be using the interview to gather ideas on how to improve cancer care delivery in North Carolina.
[return to top]How are you using the results in research and treatment?
Your interview will help us learn more about what women experience in the diagnosis, treatment, and survivorship phases of breast cancer. We hope that from these interviews, we can determine how to improve experiences of breast cancer survivors.
[return to top][return to top]