What is CBTRUS?

The Central Brain Tumor Registry of the United States (CBTRUS) is a not‑for‑profit organization committed to gathering and disseminating current epidemiologic data on all primary brain and other central nervous system (CNS) tumors, non-malignant and malignant. CBTRUS data are used to describe incidence and survival patterns, evaluate diagnosis and treatment, facilitate etiologic studies, raise disease awareness, and ultimately support brain tumor prevention.

What is a cancer registry?

Cancer surveillance programs are run by states, municipalities, or territories to collect information about new diagnoses of cancer in residents of their area. Cancer registries are information system designed for the collection, storage, and management of data on people with cancer. While some state registries are over 100 years old, the first major national establishment of cancer registries was as part of the National Cancer Act, which established the Surveillance, Epidemiology, and End Results program¹ in 9 regions.  Since 2001, all US states have cancer registries.  The American Cancer Society provides more information on cancer surveillance programs here².

¹Friedman, S and Negoita, S. 2024. History of the Surveillance, Epidemiology, and End Results (SEER) Program. JNCI Monographs. Volume 2024, Issue 65, Pages 105-109. https://doi.org/10.1093/jncimonographs/lgae033
²Cancer Surveillance Programs and Data Tracking. American Cancer Society. https://www.cancer.org/cancer/preparing-for-treatment/cancer-surveillance-programs-and-data-tracking.html

How does data get to the cancer registry?

Cancer diagnosis data move from hospitals to cancer registries through a structured, legally mandated reporting process designed to ensure accurate and complete data. When a cancer is diagnosed the case becomes reportable under state law. This process does not rely on individual physicians choosing to file a report, but rather this reporting is triggered by documentation within the medical record. Hospitals and other reporting facilities use a process called case finding to identify reportable cancers. Trained oncology data specialists systematically review pathology reports, diagnosis and procedure codes, and admission or discharge records.

Once a case is identified, the registrar abstracts standardized information from the medical record, including patient demographics, the cancer’s primary site and histology, the date of diagnosis, stage at diagnosis, and details of the initial course of treatment. These data elements follow national standards to ensure consistency across facilities and states. Cases are then submitted electronically to the state’s central cancer registry, usually within several months of diagnosis. Reporting may occur more than once, as cases are updated when staging or treatment information becomes complete.

As patients often receive care at multiple facilities, the registry may receive several reports for the same cancer. Registry staff validate the data, merge duplicates into a single official record for each primary cancer, and resolve missing or conflicting information, sometimes by querying the reporting facilities. To improve completeness, registries also incorporate data from independent pathology laboratories, out‑of‑state facilities treating state residents, and death certificate matching.

How does data from a state cancer registry get to CBTRUS?

State registries participate in one or both of two national cancer registry programs, the Surveillance, Epidemiology and End Results (SEER) program administered by the National Cancer Institute (NCI) or the National Program of Cancer Registries (NPCR) administered by the Centers for Disease Control and Prevention (CDC).  Cancer data are collected and consolidated at the state or regional level, followed by extensive quality control, including checks for completeness, internal consistency, duplicate records, and proper coding. Both NPCR and SEER have specific quality thresholds for inclusion of data.

Once a year, registries submit a standardized data file to either CDC or NCI according to detailed data submission requirements. These files include de‑identified, case‑level information such as patient demographics, cancer site and histology, stage at diagnosis, and first course of treatment, all coded using national standards maintained by the North American Association of Central Cancer Registries (NAACCR). Identifiers that could directly reveal a patient’s identity are not released in public SEER datasets.  After submission, NCI and CDC conduct additional validation and harmonization across registries to ensure consistency over time and between geographic areas. Accepted data are then incorporated into SEER and NPCR’s analytic databases, which are released annually with a deliberate time lag (typically 3 years) to allow for data maturation and quality assurance.

After these datasets are finalized, CBTRUS signs data use agreements with CDC and NCI, receives the data, performs additional quality checks and recoding, and merges these data together into a single analytic dataset.

I was diagnosed with a brain tumor. Am I in the CBTRUS registry and can you find my data?

In most cases, yes. If you were diagnosed with a brain tumor in the United States, your diagnosis was very likely included in your state cancer registry.  Your diagnosis is typically included if you were diagnosed with a reportable cancer, which includes any benign or malignant brain or CNS tumor and if you were a resident of a US state at the time of diagnosis, even if you received care out of state
cancer registry, data are protected under strict confidentiality laws. Personally identifiable information stays within the state registry and is not released to CBTRUS. If you want to know whether your specific diagnosis is reportable or how registry data are used, your state cancer registry or state health department can provide detailed information.

You can find your local registry contact information on one of the following sites:
1. National Program of Cancer Registries, Centers for Disease Control and Prevention, Contact a Registry. Contact a Registry | NPCR | CDC
2. Surveillance, Epidemiology, and End Results Program, National Cancer Institute, National Institutes of Health, About the SEER Registries. Contact a Registry | NPCR | CDC

I would like to report a potential cluster of brain tumors in my area.

Your local or state health department is the ‘first responder’ for investigation of suspected cancer clusters. They will use their up-to-date local cancer information to determine whether further evaluation is warranted.
The American Cancer Society provides more information on how potential cancer clusters are evaluated here.

The CDC keeps a comprehensive list of state, local, and territorial health departments  here.

For suspected cancer clusters outside of the United States, contact your national health department for more information.

I think I may have been misdiagnosed.

CBTRUS is unable to provide any medical advice or review individual medical information. There are many patient advocacy groups that may be better suited to guide you through your questions. We provide a list of some here.

What data can you provide about treatment options or facilities for my brain tumor type?

CBTRUS is unable to provide any medical advice or information about referrals. Your treatment options are best discussed with a medical provider.

The American Brain Tumor Association maintains a comprehensive list of brain tumor treatment centers.

A patient advocacy group may also be able to help guide you through your questions. We provide a list of some here.

I was diagnosed with a brain tumor and have lived past the survival my doctor provided. Could I have been misdiagnosed? Do you have resources I can reference?

CBTRUS is unable to provide any medical advice or review individual medical information. There are many patient advocacy groups that may be better suited to guide you through your questions. Survival can be dependent on the individual; medical providers are the best source of information.

A patient advocacy group may also be able to help guide you through your questions. We provide a list of some here.

I or someone I know was diagnosed with a brain tumor, what caused it?

There are few established risk factors for brain and other CNS tumors including single gene inherited disorders, genetic syndromes, and ionizing radiation. Research is done looking at other causes, no others have been proven to have causation as many vary by individual circumstances.

You can find risk research CBTRUS has been involved in at Listings from PubMed – CBTRUS.

How do I request access to CBTRUS data?

Our data use agreements do not allow us to provide access to raw data to those outside of the CBTRUS analytic team.  Please submit a data request or collaborative project proposal as appropriate.

How do I collaborate with the CBTRUS scientific team?

CBTRUS solicits new collaborative projects through its Request for Collaborative Project Proposals (RFA). This pathway is intended for hypothesis‑driven projects that leverage CBTRUS’s national, population‑based brain and CNS tumor data and benefit from CBTRUS’s scientific partnership.

Projects may focus on incidence and survival, diagnosis and treatment patterns, etiologic investigations, or awareness and communication.  Selected projects receive active collaboration from CBTRUS, which may include help refining the analytic plan, conducting analyses, supporting funding applications, and contributing to abstracts, presentations, and manuscripts. Proposals are competitively reviewed by CBTRUS leadership and its Scientific Advisory Board for scientific merit, feasibility, innovation, and potential impact.

How do I generate my own incidence rates for brain tumors?

National population-based cancer registry data is available through the U.S. Cancer Statistics program (which combines NPCR and SEER), or SEER.  These data can be requested through SEER*Stat, but may also be accessed through CDC Wonder, The USCS Data Visualization dashboard, SEER*Explorer,  the National Childhood Cancer Registry (NCCR) NCCR*Explorer, or CiNA Explorer.  International data may be generated through the International Agency for Research on Cancer (IARC)’s Cancer Today.

We would like to use a published figure or data from CBTRUS.

We are happy to have others share our open-source publications. Thank you for sharing the resources CBTRUS provides. We are happy you find value in our work. All we ask is that you cite CBTRUS. You can find the recommended citations for our most recent reports: Reports – CBTRUS.

For something more, please send a request via our contact form.