Frequently Asked Questions FAQs

What is the purpose of the UNC Health Registry/Cancer Survivorship Cohort (HR/CSC)?

The purpose of this research is to collect information and biologic specimens from a large group of people who are seeking care at UNC. Research with specimens (blood, tissue or body fluids) can help researchers understand how the human body works. Studies of large groups of people over long periods of time help researchers understand causes, treatments and methods for disease prevention.

To accomplish this, many specimens are collected and stored together for use in different kinds of research; this is called a specimen "biobank." The purpose of this biobank is to obtain information (data) and specimens (such as blood, tissue or mouth cheek cells) to serve as a resource for future research.

What is a Biobank?

It’s called a Biobank because it is going to be a large collection of biological samples. Your samples will be stored along with those of all the other volunteers. Researchers will study the genetic information that comes from these samples. They will look at how genes are related to the cause of diseases. With that information, researchers may find new treatments or cures.

Why is this research important?

Scientists have known for some time that many things can cause diseases, such as:

• our environment
• Like the air we breathe and water we drink
• the lifestyle choices we make
• Like whether people smoke, how much exercise they get, and the kinds of foods they eat
• ….and also our genes,
• The small part of the information in DNA that we inherit from our parents and pass on to our children and grandchildren

But what scientists don’t know is how our environment, our lifestyle choices, and our genes work together to cause or prevent diseases.

The HR/CSC is a chance to connect the dots.

Am I eligible to participate in the study?

You are eligible to participate in this research if you are 18 years of age or older, have a North Carolina address, and an appointment in the North Carolina Hospital system.

Who sponsors this research?

This research is funded by the North Carolina General Assembly’s University Cancer Research Fund (UCRF). The researchers do not have a direct financial interest in the final results of this research.

What if I have questions about this research or about my rights as a research subject?

If you have questions, you may ask now or contact the researchers listed on the first page of the written consent form.

All research on human volunteers is reviewed by a committee that works to protect the rights and welfare of those volunteers. If you have questions or concerns about your rights as a research participant you may contact the UNC Institutional Review Board at 919-966-3113.

What will happen to my biologic specimens and who will decide what research is done using the HR/CSC?

Researchers from UNC and other universities, hospitals, and health organizations conducting research using biologic specimens and data may contact the LCCC for their studies. A variety of research studies may use your specimens. Some medical information may be shared with the researchers at the other institutions but only to researchers approved by over site committees, such as the UNC Internal Review Board. The LCCC will distribute the specimens and data to the researcher, labeled only with a unique research code number. Any information that could directly identify you will be removed.

Only authorized research staff will be able to identify you and link your specimens with your data. This coded information and information from more detailed analyses will be put into a controlled-access database available only to researchers with approval from the UNC IRB and LCCC data sharing committee. One of these research groups may include The National Institutes of Health (NIH) has established a national database that will hold information from many individuals across the country, including medical information and genetic information.

How much time will the initial participation take?

Your initial participation may take up to 30 minutes. Most of this time has been factored into the total time required for your doctor’s visit. We will provide you with a parking voucher to cover 2 hours of parking in the hospital lot. Some participants will be asked to complete a questionnaire which will take between 45 and 60 minutes. We will contact you to schedule an appointment to complete the questionnaire. Also, as part of our efforts to maintain a relationship with you and learn more about your health care over time, we will request you to fill out an additional questionnaire annually.

How many visits will be needed if I join the HR/CSC?

Most of your participation will occur during your regular visit (height, weight measurements, blood draw) or when you return for another clinic visit. In some cases we will phone you to complete a questionnaire in the next several weeks or months. Additionally we will call you each year to complete a follow-up questionnaire and check to see how you are doing.

Will I receive anything for being in this research and will it cost me anything to be a part of this research?

You will not receive any payment for taking part in this research, nor will it cost you to take part in this research other than your time.

What if I want to stop participating in this research?

You may withdraw from this research at any time without penalty. If you choose to withdraw from this research contact the researcher listed on the first page of this consent form. Your current or future medical treatment at the University of North Carolina will not be affected if you withdraw from this research.

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