The Oncology Research Information Exchange Network (ORIEN) is a group of cancer centers in the US that work together on new ways to treat cancer. It's one of the largest cancer research networks in the country.
UVA Cancer Center is part of ORIEN.
What Does ORIEN Do?
The ORIEN team uses information from thousands of patient volunteers to discover:
- Why some cancer treatments only work for certain patients
- How to use information about genes and mutations to develop new cancer treatments
- Easier ways to diagnose specific types of cancer
Better understanding will help us better treat cancer.
UVA established one of the first tumor registries in the world in 1932. Since then, it has tracked cancer patients and their treatment outcomes. Researchers at UVA have discovered several of the major molecular pathways that are now the targets of specific cancer therapy. UVA Cancer Center’s strengths in cancer research and therapy have supported its status as a National Cancer Institute (NCI)–designated cancer center since 1987.
Each Person is Unique
Everyone has unique genetics and lifestyles. Our bodies each respond to illness, trauma and medical treatments in different ways. Although everyone is unique, we do also have similarities with the people in our families and communities.
We need large numbers of diverse people to volunteer for this research. This helps us understand how differences and similarities in people affect cancers. This is why we're asking you to help.
How Can You Help?
You can help by agreeing (consenting) to be part of the protocol called, “Partners in Discovery for Total Cancer Care, IRB-HSR#18445.”
What Happens in This Protocol?
If you decide that you want to help, you'll need to sign a consent form that provides you details of the program.
The protocol involves:
- NO changes to your medical care
- NO extra visits or medical procedures
- NO cost or payment to you
- Your permission for:
- Reviewing clinical information from medical records
- Collecting leftover tissue from surgeries (only if there are leftovers available that are not needed for your routine care)
- Collecting a few extra tubes of blood and cheek swabs during routine care
- Ongoing communication to:
- Let you know about other research studies
- Ask you questions about how you're doing
- Thank you and let you know how the program is going
How are people who consent to this protocol protected?
The United States Department of Health and Human Services enforces laws protecting research volunteers. There's also a standard defined at the International Council for Harmonization (ICH-GCP) that most countries follow.
The UVA Institutional Review Board for Health Science Research (UVA IRB-HSR) reviews UVA’s planned health research. They make sure the risks to patients aren't too high. The UVA IRB-HSR also makes sure that our researchers follow the protocol and the laws that protect participants.
The rules defined in the ORIEN protocol “Partners in Discovery for Total Cancer Care” keep your identity private. Only people at UVA with the right training and the right approvals can know which data and specimens are from you. They are careful to keep your privacy safe.