With Joanne Elena, PhD, MPH, at the Clinical & Translational Epidemiology Branch of the Division of Cancer Control and Population Sciences at NCI
By Sarah DiGiulio
African-Americans experience disproportionately higher rates of cancer than other racial and ethnic groups in the U.S. They are more likely to be diagnosed with more advanced cancers. And they experience higher cancer mortality rates than other groups. Yet, African-Americans continue to be underrepresented in cancer clinical trials (J Oncol Pract 2013;9:267-276).
Now researchers are taking a new approach to better understand these disparities. The NCI is launching the Detroit Research on Cancer Survivors (ROCS) study, which will follow 5,560 African-American cancer survivors (the largest ever single study of this patient population), which will look at several of the major factors that affect cancer progression, recurrence, mortality, and quality of life among these survivors. The Detroit ROCS study will focus on patients with the four most common cancers—lung, breast, prostate, and colorectal—each of which is marked by poorer survival among African-Americans than whites.
"This study is uniquely poised to investigate the major factors affecting African-American cancer survivors," Douglas R. Lowy, MD, NCI's Acting Director, said in a statement. "Efforts like this will help us move toward bridging the gap of cancer disparities, ensuring that advances in cancer prevention, diagnosis, and treatment reach all Americans."
The project is being funded by a 5-year, $9 million grant from NCI that has been awarded to Ann G. Schwartz, PhD, MPH, Deputy Center Director at NCI, and Terrance Albrecht, PhD, Associate Director for Population Sciences of the Wayne State University School of Medicine and the Karmanos Cancer Institute in Detroit.
The study will include data collected in interviews with the patients from medical records and biospecimens from the patients. The researchers are currently identifying African-Americans in the Detroit area who have recently been diagnosed with one of the four cancers using the population-based cancer registry and enrolling patients in the trial.
Joanne Elena, PhD, MPH, Program Director of the Clinical and Translational Epidemiology Branch in the Division of Cancer Control and Population Sciences at NCI, who is overseeing the grant, explained why this study is so significant—and why it will help.
1. Could you explain how this study came about and how it's different than other studies that investigated cancer disparities?
"The investigators have been working with the Detroit community for many years and wanted to better understand the factors affecting the poorer outcomes observed in African-American cancer survivors.
There are common threads of this study throughout their scientific careers and they have been developing this specific study for more than 5 years.
"There are other studies that examine many of the same factors in cancer survivors, but none with this number of African-American cancer survivors. For example, there are studies that follow breast cancer or colon cancer survivors and ask about many of the same factors here. However, I am not aware of any that also include family members to understand how a cancer diagnosis affects the family as well as the person diagnosed with cancer."
2. There are often calls for more diversity in clinical trials. Even though African-Americans have been historically underrepresented in research, what is the advantage of doing a trial with only African-Americans (versus a larger trial that includes a more equally racially diverse sample)?
"This an observational study—meaning all participants are reporting back information to the study, but living and making their own decisions. Whereas, a clinical trial will randomize the participants into two groups—one who receives an intervention and a second group who doesn't—and then compares the outcomes.
"There are merits to both approaches—studying any group on its own or having a diverse population to compare results based on race. The NCI funds studies of both designs to get a more complete understanding of the factors affecting cancers for people of all races/ethnicities. In this case, Detroit ROCS [will collect] a large variety of comprehensive data from their participants and follow them over time. By focusing on African-Americans, this study ensures they capture the factors that are specifically affecting this population in sufficient depth."
3. How would you sum up the main questions you hope this trial will answer?
"How social, behavioral, biological, and environmental factors affect the health of cancer survivors—including how the cancer progresses, whether it recurs, and [what is] the quality of life. Adding family members to the study will also help us better understand how cancer affects the well-being of those caring for the survivor as well.
"This study is important not only because it is the largest study of African-American cancer survivors in the U.S. to date, but also because it will help us understand the myriad factors that affect cancer survivors—including treatment, genetics, type of social support, neighborhood context, poverty, stress, racial discrimination, literacy, quality of life, and behavioral factors such as smoking, alcohol use, diet, and physical activity."