Data from the NCCR are made available through several sources allowing researchers, patients, and advocates to access open and controlled data and promote wider use of childhood cancer data. Read the options below to understand which option best suits your needs.
Data from central cancer registries participating in the NCCR are available at an aggregated level through this website's interactive web application, NCCR*Explorer.
NCCR*Explorer is updated annually to incorporate data from the prior year's submission of newly diagnosed cancer patients and to enhance the statistics available in the product.
NCCR makes the data available through registered and controlled access for researchers interested in using the NCCR data for their own analyses. Read the options below to understand the data products and their access requirements.
A limited set of data from the NCCR-participating registries is available for analysis through SEER*Stat. SEER*Stat is a statistical software that uses raw data to calculate cancer statistics, rates, and trends. This data cannot be downloaded and will not display case-level or patient-level data; it can only be used to display the results of statistical analytic features already in SEER*Stat. Tutorials are available describing how to use SEER*Stat.
NCCR data released through SEER*Stat are updated annually to incorporate data from the prior year's submission of newly diagnosed cancer patients.
Access to the NCCR Data in SEER*Stat is included with the SEER Research Plus Data which requires user authentication through eRA Commons or an HHS account. Investigators from research institutions must login with a valid institutional email address, provide the institution's Signing Official contact information, and agree to the Data Use Agreements and Best Practices Assurances. Visit the SEER website for instructions on How to Request Access to Research Plus and NCCR Data.
The NCCR Data Platform is a cloud-based data storage and analytic resource hosted by the NCI in an NCI-managed secure, private cloud environment. The NCCR Data Platform will support initial cohort discovery where users can search groups of patients by detailed search criteria, such as ICCC, age at diagnosis, and the length of time of survival. The cohort discovery portion of the data platform will be available in 2024.
The main features of the data platform include cohort discovery, data exploration and visualization, data access requests, and custom datasets available for analysis. If a researcher has a specific cohort of interest, they will be able to request a custom data file in the NCCR Data Platform's governance request process. Custom datasets have a risk of re-identifiability, therefore everyone requesting direct access to an individual-level dataset will be required to get approval from an Intuitional Review Board (IRB) (e.g., expedited, exempt from human subjects research) or the NCI's central IRB.
Once a data request is approved, data will be available for download to use in statistical software for analysis. However, once the Data Platform's analytic layer is available, all computing is anticipated to take place in the cloud environment only. The Data Platform will be ready for data access requests in 2024.
Researchers, advocates, patients, and others will be able to access NCCR Data Platform and submit data requests by following these steps: