Partners in Discovery for Total Cancer Care
The Partners in Discovery for Total Cancer Care protocol collects blood and tissue samples, including associated demographic and clinical data (survey data, medical records data, cancer registry data, and other related data), from thousands of patients with cancer or at risk of having cancer. Additionally, the ORIEN AVATAR program collects paired tumor and non-tumor tissue for whole exome sequencing and RNA sequencing. We’ll work with you and the IRB to set up your study.
What Does ORIEN Do?
The Partners in Discovery 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
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 support its status as a National Cancer Institute (NCI)-designated comprehensive cancer center.
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.
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
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.
To participate, you’ll need to review a consent form with a member of the study team.
Step 1: Contact the team: Email the ORIEN team or call 434.297.4320. You can say you’re interested in the study IRB-HSR#18445.
Step 2: Working with the study team, you’ll review, print, and sign a consent form:
- Consent for people with blood cancer and diseases (PDF)
- Consent for people with solid tumors (PDF)
- Consentimiento principal para personas con enfermedades o neoplasias hematológicas (PDF)
- Consentimiento principal para personas con tumores sólidos (PDF)
Please do not print and sign the consent without talking to the study team.
You can help by agreeing (consenting) to be part of the protocol called, “Partners in Discovery for Total Cancer Care, IRB-HSR#18445.”