The Carolina Endometrial Cancer Study (CECS) is a population-based study of endometrial cancer that is being conducted statewide in North Carolina in conjunction with the Central Cancer Registry. Our goal is to enroll about 1,800 adults (age 20–80) living in North Carolina (all 100 counties) at the time of their recent first diagnosis of endometrial cancer to learn more about survivorship after endometrial cancer and why some people have different outcomes and experiences. Participants will be asked to complete a baseline survey, consent to obtain medical records, a sample of stored tissue from diagnosis/treatment of endometrial cancer, and provide a saliva sample through a self-collection kit. Our participants will be contacted for follow-up for about 5 years in order to obtain updated treatment and outcomes information.
Why are we contacting you?
We obtained your name from the North Carolina Central Cancer Registry. All cases of cancer must be reported to the 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 first checked with your doctor before contacting you.
What does it mean to participate?
Participating in the study is fairly easy! Soon, you’ll be contacted by one of our study staff to answer any questions you may have about the study. If you decide to participate, we can either conduct an interview during this call or schedule a call-back time. You may also complete the survey by mail or online. Telephone interviews will be scheduled on a day and time that works best for you (weekday, evening, or weekend). The survey includes questions about your family history, medical history, lifestyle, access to care, and cancer treatments. You do not need to answer all of the questions, but we hope that you will. The survey questions may take 45 minutes.
We will also ask you if we can mail some consent forms for you to sign and return, so that we may obtain your medical records and a stored tissue sample from your diagnosis/treatment of endometrial cancer. This should only take 10-15 minutes. You will also be asked to provide a saliva sample using a self-collection kit that you can complete through the mail.
With your permission, study staff will follow up with you by telephone or mail every year or so for approximately 5 years to ask about treatment status and quality of life measures. You do not have to take part in the follow-ups. If you do, each follow-up contact will take about 15-25 minutes.
Will I receive compensation?
You will be paid $40 if you complete the survey. You will be paid an additional $30 if you provide consents for us to obtain copies of your medical records and stored tumor tissue samples, and $40 when we receive a completed saliva self-collection kit. Additional payments will be made for follow-up contacts and if we need to obtain additional medical records or tumor tissue, you will receive $15 for returning consents for updated medical records and $15 for consent to obtain additional tumor tissue samples.
Why am I important? Why should I take part?
If you were asked to participate, it means that you were selected to represent adults in North Carolina of your race and age group. We use a random selection process to make sure that our study participants accurately represent ALL adults with endometrial 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.
We Need Your Help!
Your participation, the stories you tell us, and the information you provide to us are so important. We hope that you will take part in the interviews for our study. With your help, we may be able to answer some important questions and better understand how to improve the lives of people with endometrial cancer in North Carolina.
We hope that you will say “yes” to this study!
Please contact us with any questions about this study at 866-927-6920 or through our online contact form.
This is not a clinical trial. We will not ask you to take any medicine, and participating will not change your cancer treatment in any way. Your decision about participating will not change your relationship with your doctor, the treatment they recommend, or the medical care you receive.