What is rural community health?
Rural community health is the interdisciplinary study of the health status and health care delivery systems in rural environments. Research shows that the health care needs of individuals living in rural environments are different from those residing in urban environments. Geographical location and rural environments directly influence some aspects of the health status of rural communities. We are interested in studying the influence of features commonly found in rural communities and their association with the health outcomes of the persons who live there.
Why is rural community health important?
There are notable differences between urban community health outcomes and rural community health outcomes. For this reason, studying the impact of the rural environment on health is important.
What is population-based research?
Population-based studies aim to answer research questions for defined populations, in this case, rural communities. The answers to such research questions are often generalizable to the whole population being addressed in the study hypothesis, not only to the individuals involved in the study.
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.
What do I do once I enroll?
At the time of enrollment we asked 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 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 inherit 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.
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.
What type of recontacted and how often?
Researchers are comparing your genetic make-up, or traits you inherit 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.
Providing your updated information, just like your enrollment in the study itself, is completely voluntary and will not affect your medical care now or in the future.
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.