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Donating your tissue for research

Tissue donation is an important part of cancer research. It can be meaningful to both patients and researchers.

Watch a short video from the National Cancer Institute (NCI) to learn more about tissue donation. In the video, cancer survivors and researchers describe what tissue donation means to them.

 

How are tissue donation studies done at UNC Lineberger?

UNC Lineberger Clinical Protocol Office

The Clinical Protocol Office supports cancer clinical trials at UNC Lineberger. This office protects the safety of patients who join clinical trials. They also inform members of the health care team and the general public about clinical trials.

UNC Lineberger Office of Clinical and Translational Research

The Office of Clinical and Translational Research manages tissue and blood-based research at Lineberger. This office supports research that seeks to better understand cancer. The goal is to improve the lives of patients living with cancer.

Aurora US

AURORA US brings researchers together around the world to look at breast cancer that has spread to other parts of the body. AURORA US is funded by the Breast Cancer Research Foundation. These researchers use tissue samples to understand how cancer spreads and how different treatments work. The goal is to improve the way we treat patients with breast cancer that has spread to other parts of the body.

 

Learn more about patient and community engagement at UNC Lineberger

UNC Lineberger advocates collaborate with researchers and providers through a Community Advisory Board, a Patient and Family Advisory Council, and a Patient Advocates for Research Council.

 

Patient Advocates for Research Council (PARC) 

The Patient Advocates for Research Council (PARC) at Lineberger is made up of patients, survivors and caregivers. PARC members work with researchers to make sure studies and projects meet patient’s needs.

UNC Lineberger Community Advisory Board (CAB) 

Leaders from around North Carolina serve on the Community Advisory Board (CAB). The goal of the CAB is to improve cancer care and reduce the cancer disparities across the state. CAB members work with researchers and staff to make sure cancer research is done to meet community needs.

The Patient and Family Advisory Council (PFAC)

The Patient and Family Advisory Council (PFAC) at Lineberger is made up of patients and caregivers. The goal of the PFAC is to make sure that patient and caregiver needs are met in all programs and services at Lineberger and the North Carolina Cancer Hospital. PFAC members do this by sharing the patient or caregiver perspective.

 

Additional Resources

Brochures about tissue donation

Providing Your Tissue for Research: What You Need To Know by the National Cancer Institute (6 pages) —This booklet from NCI describes the tissue donation process, how the tissue is used in research, and how patient privacy is protected.

The Importance of Tissue Samples in Research by the Research Advocacy Network (12 pages) — This booklet from the Research Advocacy Network is about tissue donation for cancer research. The booklet describes the tissue donation process and how tissue is used in research.

Other national tissue donation programs

Count Me In: Patient-Partnered Research

“Count Me In” is a program at the Broad Institute where patients and researchers work together. The goal of this program is to discover better treatments for patients. Since 2015, thousands of people living with cancer have said “count me in” to partnering with researchers.

Thousands of patients have chosen to donate their medical records, tumor samples, and genomic information to five Count Me In projects:

  • Metastatic Breast Center (MBC) Project
  • Angiosarcoma Project
  • Metastatic Prostate Center (MPC) Project
  • Gastroesophageal Cancer Project (GECProject)
  • Brain Cancer Project (BCP) 

Tissue Donation Website: Patient Driven – Broad Institute

Pattern is a program at the Broad Institute. It allows cancer patients to choose where their tissue goes for cancer research.

Tumor Donation Information – Neuroendocrine Tumor Research Foundation 

This website explains the value of tissue donation for neuroendocrine tumors. This information is true for many types of cancers.

 

Articles about tissue donation

Donating Biospecimens for Cancer Research: An Expert FAQ on the ASCO Cancer.net Blog (10/12/2017)

Research that involves biospecimens is an important step to finding new and better ways to prevent, treat, and cure cancer now and for future generations. Find out more in these Frequently Asked Questions.

Tissue Issues: Moving Towards Patient-Centered Tissue Donation for Cancer Research on Oncobites Blog (01/20/2021)

This article describes the challenges and changes in tissue donation. It also talks about using a patient-centered approach to tissue donation.