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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. ON TRACK

Late 2021

Phase 1

With the necessary technical architecture proven, send the full compliment of mCODE data elements in a registry agnostic manner - add supplemental data elements where beneficial. Update the technical architecture the capability to "trigger" data elements as needed, and with requirements for a manual "push" where desired. Also extend engagement across multiple state registry and health systems. 

Spring 2022
Phase 2

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

Fall 2022

Conference Call Information

The CodeX Cancer Registry Reporting use case has a regular cadence for its workgroup:

  • Biweekly
    • Terminology Subgroup - Every Other Friday @11amET
    • Technical Architecture Subgroup - Every Other Tuesday @3pmET
  • Monthly
    • Leadership Call
  • MedMorph
    • The CodeX team also regularly attends the MedMorph project workgroups meeting in collaboration and partnership in registry reporting

If you wish to add an agenda item or attend, please contact Greg Shemancik (

Use Case Team

Use Case CoordinatorGreg ShemancikThe MITRE Corporation
Terminology CoordinatorSharon SebastianThe MITRE Corporation
Technical Architecture CoordinatorMichelle CasagniThe MITRE Corporation
Lead DeveloperRob DingwellThe MITRE Corporation

Wendy Blumenthal

Centers for Disease Control and Prevention (CDC)

ChampionDavid JonesCenters for Disease Control and Prevention (CDC)
TerminologistWendy ScharberCenters for Disease Control and Prevention (CDC) - Subcontractor
ChampionKristina BloomquistCenter for International Blood & Marrow Transplant Research (CIBMTR)
Champion and TerminologistRobinette RennerCenter 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)
Technical ArchitectBen SmithPrincipia Health - CIBMTR Subcontract
ChampionJeremy PineCalifornia Cancer Registry
Technical ArchitectTimothy DavisonCalifornia Cancer Registry
ClinicianNina ShahUniversity of California, San Francisco (UCSF)
ClinicianCharalambos Andreadis University of California, San Francisco (UCSF)

If you'd like to learn more about this use case, please contact Greg Shemancik

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)

If interested in joining please contact Greg Shemancik,

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