This glossary contains descriptions of words and terms throughout the site that may be unfamiliar. We have included citations for any definitions that were pulled from another source.

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A

Academic medical center (AMC)

A hospital that is affiliated with a medical school. AMCs provide patient care, educate healthcare providers, and conduct research. Their emphasis on research and education means they often have access to cutting-edge technologies and treatments that may not be available at other hospitals. Learn about AMC accreditation at: Joint Commission International.

B

Biomarker testing

A laboratory method that uses a sample of tissue or blood to check for alterations in genes, proteins, or other molecules that may be driving one’s cancer. This testing can help you learn about the alterations that are unique to your tumor and enable you and your care team to identify treatments specifically designed to target those alterations. Biomarker testing is sometimes referred to as molecular profiling, comprehensive genomic profiling, tumor testing, or next generation sequencing. It is a critical first step in creating a treatment plan for any rare cancer.

Biopsy

A procedure to remove a piece of tissue or a sample of cells from your body so that it can be tested in a laboratory. Biopsies can help determine if you have cancer or another condition. Learn about different types of biopsy procedures at Mayo Clinic.

C

Cell Lines

Cancer cells that keep dividing and growing over time under certain conditions in a laboratory. Cancer cell lines are used in research to study the biology of cancer and to test cancer treatments. Source: NCI Dictionary of Cancer Terms

Cholangiocarcinoma

A rare cancer that forms in the bile ducts, tubes that carry bile from the liver and gallbladder through the pancreas and into the small intestine.

Clinical Trial

A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis, or treatment of a disease. Source: NCI Dictionary of Cancer Terms

D

Driver mutation

A term used to describe changes in the DNA sequence of genes that cause cells to become cancer cells and grow and spread in the body. Source: NCI Dictionary of Cancer Terms

E

Esophageal cancer

Cancer that forms in tissues lining the esophagus, the hollow, muscular tube that passes food and liquid from your throat to your stomach. This may also be referred to as gastroesophageal cancer.

G

Gene mutation

A permanent change in the DNA sequence that makes up a gene. Most gene mutations have no effect on health, but some can lead to genetic disorders or illnesses. Learn more about gene mutation from the American Cancer Society.

Genetic (germline) testing

This type of testing looks for changes, sometimes called mutations or variants, in your DNA. Genetic testing can help individuals learn about how conditions are inherited in families, what screening and testing options are available, and, for some genetic conditions, what treatments are available.

Genetic counselor

A trained healthcare professional who can help interpret genetic test results and explain how genetic conditions might affect you based on your personal and family history. Learn more about genetic counseling from the Centers for Disease Control (CDC) and the National Society for Genetic Counselors.

Genomics

The study of all of a person's genes (the genome), including how those genes interact with each other and with the person's environment. It can help researchers discover why some people get sick from certain infections, environmental factors, and behaviors, while others do not.

I

Immunotherapies

A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases. Source: NCI Dictionary of Cancer Terms

M

Medical oncologist

A doctor who has special training in diagnosing and treating cancer in adults using chemotherapy, hormonal therapy, biological therapy, and targeted therapy. A medical oncologist often is the main health care provider for someone who has cancer. A medical oncologist also gives supportive care and may coordinate treatment given by other specialists. Source: NCI Dictionary of Cancer Terms

Mouse model

The use of special strains of mice to study a human disease or condition, and how to prevent and treat it. Source: NCI Dictionary of Cancer Terms

Multidisciplinary academic center

Another term for Academic Medical Center (AMC). AMCs are sometimes called this because they use a treatment planning approach that includes doctors and other health care professionals who are experts in different disciplines—or medical specialities—working together to coordinate care on behalf of a patient.

Multidisciplinary care team

A group of health care professionals from different disciplines—medical specialities—who work together to provide high-quality, coordinated care to patients. These teams can include doctors, nurses, oncologists, radiologists, counselors, dieticians, and more.

N

NCI-designated center

There are 72 National Cancer Institute (NCI)-Designated Cancer Centers, located in 36 states and the District of Columbia, that are funded by NCI to deliver cutting-edge cancer treatments to patients. Most of the NCI-Designated Cancer Centers are affiliated with university medical centers although several are freestanding institutions that engage only in cancer research. Source: NCI Dictionary of Cancer Terms

P

Pathologist

A doctor who has special training in identifying diseases by studying cells and tissues under a microscope. Source: NCI Directory of Cancer Terms

Patient population

A collection of individuals grouped together based on having a shared health condition.

Patient-derived xenograft

Tumor tissue taken from a patient and implanted into mice for research purposes. Because patient-derived xenografts can replicate specific characteristics of cancers, they are a critical tool for researchers seeking to understand a particular rare cancer or develop drugs for it. Rare cancer drugs and other types of treatment may be tested on xenografts to see how well they work before being given to the patient. Also called PDX.

Peer-reviewed journal

A publication that contains original articles that have been written by scientists and evaluated for technical and scientific quality and correctness by other experts in the same field. Source: NCI Directory of Cancer Terms

Precision medicine

Sometimes called "personalized medicine," it is an approach to tailoring disease prevention and treatment to account for differences in people's genes, environments, and lifestyles. The goal of precision medicine is to get the right treatments to the right patients at the right time. Source: U.S. Food and Drug Administration

Q

Quality of life

The overall enjoyment of life. Many clinical trials assess the effects of cancer and its treatment on the quality of life. These studies measure aspects of an individual’s sense of well-being and ability to carry out activities of daily living. Source: NCI Directory of Cancer Terms

R

Remote consenting

A method of obtaining permission to participate in a clinical trial where the participant is in a different physical location from the trial team. This process typically uses a paper or electronic consent form through which the participant acknowledges understanding of the possible risks and benefits of participation.

S

Second opinion

In medicine, the opinion of a doctor other than the patient’s current doctor. The second doctor reviews the patient’s medical records and gives an opinion about the patient’s health problem and how it should be treated. Source: NCI Directory of Cancer Terms

Standard of care

Treatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by health care professionals. Also called best practice, standard medical care, and standard therapy. Source: NCI Directory of Cancer Terms

T

Tissue sample repository

Facilities that collect, store and distribute samples of tumor tissue donated by patients for use in cancer research.

Tissue-agnostic drug development

The development of a therapy or medication that treats cancer based on its genetic features, not its location in the body. ​​Learn more about tissue-agnostic drug development from the U.S. Food and Drug Administration.

Tumor

A solid mass of tissue that forms when abnormal cells group together. Tumors may be benign (not cancer) or malignant (cancer).

Tumor progression

The course of cancer as it grows or spreads in the body.