Study Information

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

We asked patients who had an appointment in the North Carolina Hospital system to think about being part of this historic scientific effort. The goal of the HR/CSC was to better understand the causes of diseases, like cancer, which affect many North Carolinians.

We enrolled over 7,500 North Carolinians in the Registry. This website is designed to explain what it meant to enroll as a participant in the UNC Health Registry/Cancer Survivorship Cohort.

The purpose of this research was to collect information and biologic specimens that will be collected and stored together for use in different kinds of research; this is called a specimen "biobank." The purpose of this biobank is to serve as a resource for future research. Researchers use specimens and data from participants to study how genes, lifestyle and our environment may lead to disease and to study what things may affect how people do after they are treated.

In order to be eligible, participants needed to meet these requirements:

What happened if participants took part in this research?

Participants were asked to do the following if they agreed to join the Registry:

  1. Give a small blood sample (about 2-3 tablespoons) or cheek sample from a mouth rinse which will be stored in the Registry’s Biobank
  2. Allow any leftover tissue to be stored if you have a biopsy or surgery
  3. They may have been asked to answer a survey once a year
  4. Agree to allow researchers to get information from your medical records
  5. Agree to allow researchers to contact you in the future to invite you to take part in other research studies.

What were the Risks of Participation?

There were minimal risks to participating in this research.

What are the Benefits of Participation?

Research was designed to benefit society by gaining new knowledge. The information provided will help researchers better understand the causes, treatments and prevention of disease, as well as ways to improve health care and quality of life. Future generations may benefit from the results and knowledge gained from this research – maybe even for your own children or your neighbors’ children.

Read more in our Frequently Asked Questions

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