The OHSU Knight Cancer Institute has many databases of cancer information. These databases, called registries, contain information and samples collected voluntarily from patients and families. They play a vital role in research. They can also benefit patients now and in the future. Registries:
- Help researchers understand how cancer works so they can develop better treatments and work toward cures.
- Let patients and families contribute to this research, potentially unlocking cures for future patients.
- Help some families learn if they are at high risk for certain cancers so they can take precautions.
- Enable participants to learn about new treatments and discoveries.
Find information about specific registries and how to contact them below.
Understanding cancer registries
How do they work?
Registries collect information and, in some cases, blood and tissue samples. Registries that collect blood and tissue samples are also called repositories.
Researchers analyze the information and samples. Over time, they can see patterns, such as which treatments work best.
Registries for inherited types of cancer can identify families at high risk. Researchers, in addition to studying how cancers work, can also improve screening and care for families at high risk.
How can they help me?
Participants can feel good about contributing to research that could lead to cures and better treatments. Patients and families play an essential role in expanding scientific understanding, propelling OHSU’s mission to heal, teach and discover.
Participants also learn about advances. Those with a type of cancer that can be inherited can learn if their family is at high risk. The Knight Cancer Institute offers additional services, such as genetic testing and counseling, to help patients manage their risk.
What about my privacy?
Federal privacy protections require that all patient personal health information be kept confidential. We make sure that your information, whether in paper or electronic form, is secure. We also won’t share your personal health information or samples without your written permission. Registry data made available to researchers is shared without any identifying information.
What happens if I join?
Each registry has requirements for participants, such as a certain health history or a minimum age. If you meet these eligibility criteria, you will be asked to complete a consent form.
If you become a participant, you may be asked to fill out a questionnaire. In some cases, you may be asked to contact family members to help us better understand your family health history. Some participants are asked to donate blood or tissue samples.
What if I change my mind?
You may withdraw from a registry at any time and for any reason.
OHSU and Knight Cancer Institute registries
The OHSU Bone Marrow Transplant Program belongs to the Center for International Blood & Marrow Transplant Research or CIBMTR. The center, established in 1972, contains information on more than 425,000 transplant patients.
- Conducts studies and shares findings.
- Shares samples and data with other researchers.
- Collects and maintains outcomes information.
- Provides training and expertise.
This work continues to help the center and others improve care, access and outcomes for transplant patients.
The Oregon Colorectal Cancer Registry, or OCCR, collects data from families with a history of colorectal cancer. In some cases, the registry staff also collects blood and tissue samples.
Registry staff members gather information from medical records and a family history questionnaire. They look for signs of inherited cancer syndromes such as Lynch syndrome or familial adenomatous polyposis, which significantly increase the risk of colorectal cancer. They also identify families at high risk of colorectal cancer and offer referrals to a Knight Cancer Institute clinic for genetic counseling and risk assessment.
A registry coordinator can also help patients manage their care by streamlining appointments and connecting them with the specialists they need.
The Esophageal Cancer and Related Diseases registry, begun in 2004, contains information and blood and tissue samples from people across the country. It also includes data and outcomes of patients who had esophageal surgery.
The registry aims to help researchers shed light on esophageal cancer and related conditions, such as acid reflux, heartburn and Barrett’s esophagus. Researchers also look at genes that might put people at higher risk of cancer of the esophagus, stomach or upper intestine.
The GIST Registry contains information about patients treated for GIST, or gastrointestinal stromal tumors. The registry includes data on demographics, care and outcomes.
- The Oregon Liver Tumor Registry, or OLTR, collects information about patients with liver tumors or disease to help researchers improve outcomes. The registry focuses on patients at high risk of liver cancer, especially those with viral hepatitis or alcohol-related cirrhosis. Participants provide tissue samples and information about their medical history.
- The Hepatic Resection Database, started in 2003, collects information about outcomes for patients who have had part of their liver surgically removed to treat cancer or another liver disease.
The Melanoma Community Registry is a study group of melanoma survivors, relatives and friends. Participants receive information about research projects, educational events and volunteer opportunities. Participants are asked to fill out surveys or to participate in discussions about their family history of melanoma, sun exposure and related topics. They are also asked to share medical records and are invited to provide photos of skin lesions. The registry’s data, minus identifying information, is made available to researchers.
The Sentinel Lymph Node Working Group, or SLNWG, collects information on patients with melanoma and other skin cancers. The group focuses on outcomes and recurrence patterns among patients who had sentinel lymph node dissection.
Contact: Dr. John T. Vetto at firstname.lastname@example.org
The Dermatology Molecular Profiling Tissue Resource, or MPTR, collects tumor samples and information from OHSU patients treated for head and neck cancers, skin cancers and other diseases of the skin and oral/nasal cavity. The repository and database, started in 2001, are collaborations of OHSU’s dermatology and otolaryngology departments.
The OHSU Cancer Registry was established in the 1960s. It collects information on the demographics, diagnosis, treatment and outcomes of all patients diagnosed with cancer or with any brain or spinal cord tumor. The information is studied and shared with national and state databases, including the Oregon State Cancer Registry.
Personal information linked to the data is kept confidential.
The OHSU Knight BioLibrary Research Repository collects patient data, tissue, blood and other bodily fluids for research on cancer and other diseases. As with the other registries and repositories, participants must consent and can withdraw at any time. The repository, approved in 2008, is among OHSU’s largest collections of information and material devoted exclusively to research.
The Oregon Ovarian Cancer Registry, or OOCR, collects health histories from families across the Northwest to look for patterns of cancer and inherited syndromes such as BRCA gene mutations. Some participants also agree to give blood or tissue samples.
The registry gives participants updates on advances in treating ovarian cancer. Those identified as being at high risk for ovarian cancer can receive referrals for genetic counseling, screening and other OHSU services.
- The Oregon Pancreas Tissue Registry collects information and tissue samples from people with a family history of pancreatic cancer, related syndromes or chronic pancreatitis. The goals are to:
- Provide data that helps researchers find ways to lower the number of people who develop pancreatic cancer.
- Identify people at higher risk of pancreatic cancer so they can receive screening and genetic counseling.
- Help doctors and other health care providers better understand these illnesses and screening recommendations.
The Sarcoma Survivorship Registry collects information from sarcoma survivors to help researchers study how treatments affect patients. Participants can either make an appointment in the sarcoma clinic on OHSU’s South Waterfront campus or choose to complete an electronic consent form. The registry involves filling out a survey that takes about 20 minutes. Participants can also choose whether or not they want to be contacted in the future about other research specific to sarcoma survivors.
To be eligible, participants must:
- Be older than 15.
- Have been treated for any type of sarcoma.
- Have finished treatment at least two years ago.
- Show no evidence of sarcoma now.
Contact: SarcomaSurvivor@ohsu.edu ; please put “Sarcoma Survivorship Registry” in the subject line.
The Oregon Index of Endocrine Neoplasias, or ORION, collects information such as outcomes data on patients with thyroid, parathyroid and adrenal tumors, as well as tumors of the neuroendocrine system. Participants are asked to share medical information plus a small tissue or blood sample that was collected as part of treatment. Among goals of the index are to:
- Track patients with thyroid cancer, the cancer with the nation’s highest increase in incidence rates.
- Follow outcomes of endocrine cancer patients.
- Help researchers find ways to improve patient care.
- Share information with health care providers about standards of care and innovative treatments.
Contact: Enrique Leon at email@example.com
- OHSU Knight Cancer Institute genetic counseling and risk assessment services
- Cancer Surveillance Programs in the United States, American Cancer Society
- National and State Cancer Registries, National Cancer Institute
- Surveillance, Epidemiology, and End Results Program, also known as SEER, National Cancer Institute
- National Program of Cancer Registries, Centers for Disease Control and Prevention