Frequently Asked Questions
What is the Spit for the Cure?
Spit for the Cure is a breast cancer research study currently led by Susan Kadlubar, Ph.D. The research is conducted at the College of Medicine, Department of Medical Genetics and the Winthrop P. Rockefeller Cancer Institute at UAMS. Spit for the Cure began as an idea initiated by Susan Kadlubar, Ph.D., and Suzanne Klimberg, M.D., from UAMS. While driving back from a conference during the summer of 2007, these investigators began brainstorming new ways to address breast cancer research in Arkansas. What they came up with was a unique way to invite women of Arkansas to personally contribute to the fight against breast cancer.
In 2007, we launched our recruiting efforts with events associated with the Arkansas Susan G. Komen Race for the Cure ® . Women from all over the state of Arkansas took this unique opportunity to be involved and became pioneers in breast cancer research.
Today, Spit for the Cure includes over 20,000 women and represents every county in Arkansas. Our recruiters have attended breast cancer awareness events, community health fairs, support programs and faith-based events throughout the state. We work with the Winthrop P. Rockefeller Cancer Institute Arkansas Cancer Control Network, our local Susan G. Komen for the Cure® Affiliates (Arkansas and Ozark), the Arkansas Department of Health BreastCare™ program, and many other cancer prevention and educational organizations in Arkansas. The Spit for the Cure breast cancer cohort is continuing to expand and develop into a comprehensive representation of the women of Arkansas.
What is a Cohort?
Our study literature refers to the Spit for the Cure “breast cancer cohort.” So what is a cohort? In public health studies, a cohort refers to a group of participants who share a common trait or experience (such as gender or age). Cohorts are usually followed by researchers for a period of time as part of the study. That is why it is so important for us to receive regular updates from each participant.
Who can participate?
Women between the ages of 18-100 are eligible to enroll in Spit for the Cure.
Why can’t men spit?
Due to the low occurrence of breast cancer in men, we are not recruiting male participants at this time.
What do I do once I enroll?
At the time of enrollment we ask women to sign a consent form, provide a saliva sample for DNA extraction and answer a short questionnaire. Individuals willing to be recontacted will receive follow-up materials from study staff asking questions concerning their health over the next 30 years.
Participation is completely voluntary. You may withdraw from the study at any time. If you decide not to participate in this study, it will not affect your medical care now or in the future.
How long does it take?
For most women, it takes about 10-15 minutes to complete the process of providing consent, providing a saliva sample and answering the questionnaire.
How do the questions you ask relate to breast cancer?
On the questionnaire we ask questions relating to demographics, personal and/or family history of breast cancer, and lifestyle choices. We then use a unique identifying barcode to link this to the information gathered from your DNA. Knowing this information can guide our research in the future. It also allows us to development more in-depth follow up questionnaires.
Will you know if I am at increased risk for breast cancer?
As women, we are all at risk to develop breast cancer, especially as we age. Through this research we hope to identify factors that put women at increased risk for breast cancer. We also hope to find out more about why some women respond to treatment and others do not.
We are not searching for the known breast cancer genes (BRCA1/BRCA2) specifically. What we are trying to do is determine how the traits you inherited from your mother and your father affects the way you react to your environment. Our researchers are looking for new gene-environment interactions.
We look at differences and make comparisons in DNA and questionnaire data from the cohort as a whole. That means we analyze your information as part of a large group and do not look at individual results. Therefore, we will not be identifying individuals who are at an increased risk for breast cancer.
Why collect saliva?
Most researchers still use white blood cells from blood to collect DNA. While this has been an accepted method for several decades, advances in technology have given us the ability to collect and remove DNA from the white blood cells in saliva. Not only is the collection of saliva a simple, pain-free process, but it also aids in our ability to reach individuals in their own communities and
during large events like the Susan G. Komen Race for the Cure®.
What is DNA?
DNA contains all the genetic information that defines who we are as individuals and it is nature’s mechanism for controlling how all living things function. There has been an increasing focus over the past decade or so to understand better how DNA controls the human body. The most significant research initiative in this regard was The Human Genome Project. This study resulted in a mapping of the human DNA (which contains 3 billion bits of information in every cell). This mapping has accelerated interest into further research on how DNA impacts individual health conditions across almost every type of disease.
How does my DNA help with breast cancer research?
In order to answer questions that relate inherited traits to environmental triggers, researchers need samples from thousands of women. The more DNA samples we are able to quickly attain, the faster we will be able to advance our scientific findings. We hope the information we find in DNA linked to answers from the questionnaire will give us more insight into what affects breast cancer risk or treatment options for women in the South.
What happens to my saliva/DNA?
After you provide your saliva sample, recruiters take the sample back to UAMS where it is stored until enough samples are collected for processing. Then we extract or remove DNA from the white blood cells found within the saliva. Finally, the DNA is tested to determine which genes or parts of genes are present. Researchers can then link the questionnaires and genetic data to begin addressing gene-environment interactions.
If you decide to withdraw from the study, your information, including the information from your saliva sample, will be pulled out of the research data and will not be used at all. Withdrawing from the study will not affect your medical care now or in the future.
Why spit instead of a swab?
You may have seen TV shows like CSI where investigators use a swab to collect a DNA sample from inside the cheek. Or perhaps you have been to a doctor’s office where they use a swab for the collection of DNA. This method is useful; however, it may lead to contamination by bacteria in your mouth. Saliva actually has fewer bacterial contaminants than the lining of your cheek. Collecting saliva allows us to preserve and store samples until we assemble enough samples for processing.
What type of recontact and how often?
Researchers developing Spit for the Cure are comparing your genetic make-up, or traits you inherited from your parents, and the way those traits interact with your environment. Participants in the study will be followed by investigators for a period of time to address these questions properly. That is why it is so important for us to send out and receive regular updates from each participant.
These updates should occur every six to twelve months. The questions are likely to relate to your current contact information, your health, and more detailed questions concerning specific risk factors or treatment options for survivors. There will be multiple ways for you to respond to these requests for updated information: through the mail, by phone, during repeat recruiting events, as well as through our website.
Can my family participate?
Yes! We encourage blood relatives to participate. When family members enroll it allows researchers to look at unique questions relating to similar genes and environmental exposures.
How is my identity protected?
DNA samples and answers from the questionnaire will be used to create a “bank” of information for future studies. After enrollment, we label all of your materials with an ID number connected to a barcode. This allows us to link your information from the questionnaire and DNA without using your name or contact information. All of your contact information is kept in a separate, password protected, secure database. We do not give out your personal contact information. Researchers will need to access the samples and data to address specific questions related to the factors affecting breast cancer risk and treatment. They will do this through use of the unique ID numbers associated with the samples and data. This prevents access to any information that could identify you as a person.
Where can I participate?