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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 you?

Why is my information important?

Why am I important?

Who participated 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 does it mean to participate?

What is the time line for participation?

Are you still enrolling new participants?

No, CBCS3 enrolled new participants between 2008 and 2013, successfully recruiting 2,998 women into our study. Since then, CBCS3 study staff have been following up with participants every 1-2 years to follow up on how they are doing since their initial breast cancer diagnosis. CBCS3 is extremely thankful for our participants’ dedication and generosity.

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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 3 phases of CBCS. That’s over 200 peer-reviewed articles!

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How did we first contact you?

By law, all newly diagnosed cancer cases are reported to the North Carolina Central Cancer Registry. The Registry can provide qualified researchers with some of this information as long as they let the person’s doctor know about the study first. We checked with your doctor before ever contacting you and giving you the choice of participating or not. Thank you for saying, “Yes!”

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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 in any of its phases, so it isn’t likely this research will help participants directly. Nevertheless, your information may help identify some of the causes of breast cancer and determine which treatments are most effective. 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.

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Why am I important?

If you were asked to participate, it means that you were selected to represent women in North Carolina of your race and age group. We used a random selection process to make sure that our study participants accurately represent ALL women with breast cancer in their race and age group. Therefore, once you have been asked to participate, no one can fill your place without affecting the quality of the study.

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Who is 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 III. This is on top of the 4,000 women who already participated in the 1st two phases of study between 1993 and 2001.

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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.

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Why was it so important that CBCS3 “oversampled” Black women?

“Oversampling” refers to enrolling participants from a group of people at a rate higher than that group’s share of the population. In our case, 50% of those enrolled in CBCS3 identified as Black or African American. This is an important technique. It enables CBCS3 researchers to gain a fuller sense of the experiences of Black women with breast cancer and to see differences within Black women and differences compared to non-Black women that would have otherwise gone unnoticed. CBCS3’s continued success comes from its participants, who graciously agreed to share their lives with us.

UNC Health created a video about the importance to science, medicine, and, especially, Black communities that Black women participate in research.

What is the difference between this study and a clinical trial?

Unlike a clinical trial, we have not and will never ask you to take drugs or medicine of any kind, and we will not treat your breast cancer. Your decision about participating should not have changed your relationship with your doctors, the treatment they recommend, or the medical care you receive.

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What does it mean to participate?

Our participants continue to be part of the largest study of breast cancer in the South. CBCS3 is one of the first studies to include a very large number of black women, and it is the first study to look at different subtypes of breast cancer.

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What is the timeline for participation?

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.

(Click to enlarge image.)
Participation Timeline

 

 

 

 

 

 

 

 

 

 

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