Project Overview


  • Clinical data is stored in disparate systems that use multiple data storage formats. Dispersed cancer treatment sites reporting to a centralized cancer registry presents many challenges for data aggregation.
  • Data collection and aggregation puts a high burden on both reporters and data registries. Reporting sites convey critical patient information using designated forms that require largely manual processes to complete, and each site has unique processes for clinical data collection.
  • Variability in patient data collection processes negatively impacts overall understanding of patient care. Heterogeneity of data collection makes it difficult to aggregate and share data for use in improving clinical research and standards of care.


  • A patient diagnosed with cancer. That patient begins therapy, and though a set of extended mCODE elements that patient’s status is tracked. As that patient’s therapy progresses, outcomes are tracked, and effectiveness of care is determined in real time. All this information is reported from the clinical site to the designated cancer registry, in a low-burden and semantically interoperable way. Connecting patient status, response, and disease progress provides greater insights into standards of care provided. 

Target Outcome:

  • Enable low-burden, standardized reporting of cancer data from cancer centers to registries that are aggregating data for different reasons.

  • Consider use of mCODETM and extensions for registry reporting to assess cross-center standards of care. Other potential scenarios could expand scope to support population health, clinical trials, post-market surveillance, quality reporting, comparative effectiveness and more.


  • Reporting sites with cancer patients can seamlessly and easily transmit patient data to cancer registries with greater insights into standards of care for patients, improving care understanding and practice.

Project Plan




DiscoveryUse case identification 



Plan out high level project plan, deliverables, success measures, high level timeline, key stakeholders, etc


Phase 0 Create a proof-of-concept that demonstrates the ability of a FHIR enabled solution to submit a core subset of mCODE cancer patient data to both a private and state cancer registry, proving the underlying technical architecture and registry agnostic nature of the solution.  COMPLETE

July 2022

Phase 1

With the necessary technical architecture proven, operationalize the data transmission at the private registry and demonstrate primary case data extraction with a state registry to expedite incidence and prevalence reporting.


TBD; CDC is piloting the Central Cancer Registry Reporting Guide (mCODE) in 2023-2024 through non-CodeX efforts.

Phase 2

Standardize this capability through the HL7 process, publishing an Implementation Guide, ensuring fully tested. With this resource available, scale to additional users. 


Conference Call Information

The CodeX Cancer Registry Reporting use case is holding monthly touch base meetings with the use case members: 

  • Monthly
    • Every 4th Tuesday @3pmET

If you wish to add an agenda item or attend, please contact Gail Shenk (

Use Case Team

Use Case CoordinatorGail ShenkThe MITRE Corporation
Terminology CoordinatorSharon SebastianThe MITRE Corporation
Technical Architecture CoordinatorGail ShenkThe MITRE Corporation
Lead DeveloperRob DingwellThe MITRE Corporation

Caitlin Kennedy

Centers for Disease Control and Prevention (CDC)

ChampionSean PorterCenters for Disease Control and Prevention (CDC) - CTR
Champion and TerminologistJane PollackCenter for International Blood & Marrow Transplant Research (CIBMTR)
Health System Outreach/CoordinationBridget WakarukCenter for International Blood & Marrow Transplant Research (CIBMTR)
Technical Architect

Bob Milius

Center for International Blood & Marrow Transplant Research (CIBMTR)
Technical ArchitectBill BurgessCenter for International Blood & Marrow Transplant Research (CIBMTR)
Technical ArchitectTom WiegandCenter for International Blood & Marrow Transplant Research (CIBMTR)
ChampionJeremy PineCalifornia Cancer Registry
Technical ArchitectTimothy DavisonCalifornia Cancer Registry
IT LeadMark Bridge University of California, San Francisco (UCSF)
ChampionDavid LindsayOncora Medical

If you'd like to learn more about this use case, please contact Gail Shenk

Current Partners 

  • The MITRE Corporation
  • Centers for Disease Control and Prevention (CDC)
  • Center for International Blood & Marrow Transplantation Research (CIBMTR)
  • California State Cancer Registry
  • University of California, San Francisco (UCSF)
  • Oncora Medical

If interested in joining please contact Gail Shenk,

  • No labels