RECENTLY COMPLETED STUDIES (2006-2015)
Black Women: Etiology and Survival of Triple Negative Breast Cancers (BEST) Study
What were the aims of this study?
The study of health disparities is a new and emerging field in research. As part of our research efforts, we considered that young Black women get breast cancer less often than White women, but are more likely to die from it. This may be caused by a type of aggressive breast cancer, called ‘triple negative’ (TN) disease, which is more common in Black women. The aim of this study was therefore to explore why young Black women get the more serious type of TN breast cancers.
Who participated in this study?
All participants recruited for this study were identified through the Florida Cancer Registry called the Florida Cancer Data System (FCDS). All participants met the following criteria:
- Female gender
- Self Identified as African American
- Must be under the age of 50
- Must have been diagnosed with breast cancer between January 1, 2009 and December 31, 2012
- Must be included on the FCDS list provided
- Must have lived in the state of Florida at the time of their breast cancer diagnosis
- Must be able to speak English
- Must be able to provide written informed consent
- Must have been diagnosed with invasive breast cancer
How many participants enrolled in this study?
Over the five year period of this study, we successfully recruited over 400 Black women into our study.
What did participation entail?
After recruitment into the study, we collected detailed medical and lifestyle information about each participant using a questionnaire. The participants were also re-contacted every year for the duration of the study to keep track of how they were doing. As part of our study, we provided no-cost genetic counseling and testing for the participants. These test results allowed the recruits and their families to make important decisions about their healthcare.
What made this study unique?
This study was unique because our research team included Black community members. They helped ensure that our research was relevant, and that the recruitment and study procedures were conducted in a sensitive manner. They also helped share important study findings with the Black community.
What information was obtained from this study?
Our results have shown that over 12% of women with breast cancer diagnosed at or below the age of 50 had a BRCA mutation, which is more than double what we had expected. This suggests that it may be appropriate to recommend BRCA testing in all Black women diagnosed with breast cancer at or below the age of 50, regardless of their family history.
Additionally, women with private insurance and a higher household income were more likely to access genetic services, with the strongest determining factor being a referral from their healthcare provider. This suggests that raising awareness about the importance of inherited breast cancers among patients, as well as healthcare providers, is needed.
Funding Agency: Bankhead Coley
Years Conducted: 2010-2015
A Population-Based Study of Inherited Breast Cancer in Young African American Women with Breast Cancer
What were the objectives of this study?
- To determine if it is possible to recruit young African American women with breast cancer through the Florida Cancer Data System (FCDS), a statewide population-based registry. (At the time, previous research indicated that African American Women were unlikely to participate in registry-based research).
- To find out how common alternatives in the BRCA1 and BRCA2 genes are in these women.
- To spread information about breast cancer genetics through community partnerships, at local, regional and national levels.
How is the registry-based recruitment method used in this study different from other recruitment methods?
When researchers recruit participants, it is often done face to face. A potential participant is usually approached at a clinic or out in the community. Once approached, the participant is asked to be a part of the study by a team member. If they are interested, they join the study by signing a consent form.
In this study, our initial contact was not face to face. We received a list of names from the Florida Cancer Data System. This list included all individuals diagnosed with cancer that fit our inclusion criteria. We contacted these individuals first by US mail and then by calling them to see if they were interested in participating. If they were interested, a consent form was mailed to them. Women were officially enrolled when the consent form was returned to us via US mail.
What was learned from this study?
Through this study, we were able to gain a better idea of the prevalence of BRCA mutations in the African American population. In our population, the frequency of mutations was about 7%. This is similar to what is seen in the Caucasian population (7-10%). In addition, we learned that African American women are interested and willing to participate in research even if they are apart of a registry-based sample. They also found genetic counseling to be an enjoyable experience. Most importantly, this project laid the groundwork for future studies of biological reasons for breast cancer and feelings about genetic testing in this population.
Funding Agency: Susan G. Komen Foundation
Years Conducted: 2006-2010
OTHER PAST STUDIES (1999-2006)
Investigation of BRCA1/2 and Hormonal Risk Factors in African-Americans
About this study:
In this study, we examined genetic factors in African American women by looking at the involvement of the high penetrance BRCA1 and BRCA2 genes through genetic testing. Low penetrance genes were studied through examination of hormonal risk factors such as age at menstruation, age at menopause, pregnancy and lactation history, oral contraceptive pill, and hormone replacement therapy.
What we learned:
This study improved our understanding of inherited breast cancer in young African American women. It also laid the groundwork for future studies in the state of Florida directly investigating ‘weak effect’ genes and changes in hormone metabolism in young African American women.
Funding Agency: American Cancer Society – Florida Chapter
Years Conducted: 2002-2006
African-American Families with Inherited Breast or Ovarian Cancer
About this study:
This was a hospital-based study of African-American women with 1) breast cancer diagnosed at a young age and/or 2) a family history of breast and/or ovarian cancer. All participants received pre- and post-test genetic counseling by a geneticist or genetic counselor. Complete sequencing of the BRCA1 and BRCA2 genes was performed and patients will be given the option to receive results.
Funding Agency: Department of Defense
Years Conducted: 1999-2001
Vadaparampil S, Pal T. Developing a Study Brochure for a Cancer Registry-Based Study of BRCA1/2 Mutations among Young African American Breast Cancer Patients: Lessons Learned Journal of Community Genetics, 2010 1(2), 63-71.
Vadaparampil S, Quinn G, Gjyishi A, Pal T. Using Focus Groups to Develop a Brochure for Increasing Awareness of Inherited Breast Cancer in Black Women accepted, Genetic Testing and Molecular Biomarkers.
Permuth-Wey J, Vadaparampil S, Kinney A, Rhumps A, Pal T. (2010). Development of a Culturally Tailored Genetic Counseling Booklet about Hereditary Breast and Ovarian Cancer for Black Women, American Journal of Medical Genetics, 152A(4):836-45
Pal T, Rocchio E, Garcia A, Rivers D, Vadaparampil S. Recruitment of Black women for a study of inherited breast cancer using a State Cancer Registry. In Press, Genetic Testing and Molecular Biomarkers.
Pal T, Stowe C, Cole A, Zhao X, Lee JH, Vadaparampil S. Evaluation of phone-based genetic counseling in Black women using culturally-tailored visual aids Clinical Genetics, 78(2), 124-131, 2010.
Pal T, Vadaparampil S, Betts J, Miree C, Li, S, Narod S: BRCA1/2 in High-Risk African American Women with Breast Cancer: Providing Genetic Testing through Various Recruitment Strategies. Genetic Testing. 12(3): 401-407, 2008.