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Registries on FHIR
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Registries on FHIR

Registries on FHIR is a PCPI project launched in collaboration with the Duke Clinical Research Institute and the Medical Device Epidemiology Network (MDEpiNet), an FDA public-private partnership.

Registries on FHIR aims to demonstrate the value of adoption of common clinical data elements in registries to improve interoperability. Health Level Seven® International (HL7®) Fast Healthcare Interoperability Resources (FHIR®) is a standard that if adopted in registries, EHRs and related systems will improve interoperability in health care.

By drafting and testing in registries a common clinical data set based on existing standards including the ONC 2015 Common Clinical Dataset, we aim to show a measurable reduction in registry data acquisition burden and improvements in registry data quality.

Expected deliverables:

  • An implementation guide based on HL7 FHIR that contains a common clinical data standard set for registries, tested in multiple registries
  • A publication with the results of an effort to measure the cost/effort to apply the standards, as well as benefits e.g., reduced registry burden of participation, improved data quality


Most organizations in health care use, operate or exchange information with multiple data systems, both inside and outside of the organization. Interoperability is the useful exchange of information between two systems; there are distinct levels of interoperability. Syntactic interoperability is the ability of two systems to exchange data. Semantic interoperability occurs when the meaning of the information contained within the data is preserved in the exchange. Health Level Seven International (HL7) Fast Healthcare Interoperability Resources (FHIR) is a standard that if adopted in registries, EHRs and other source data systems will improve interoperability in health care.

Work to date


  • Published through HL7 the Common Clinical Registry Framework Domain Analysis Model, which lays out the structure, actors and information flows that constitute a general registry
  • Launched the NQRN Interoperability Work Group with co-chairs Doug Fridsma, MD, PhD, FACP, FACMI, American Medical Informatics Association, and Frank Opelka, MD, FACS, American College of Surgeons. Work group participants include registry stewards, vendors and other stakeholders
  • Completed information-gathering campaign to understand registry interoperability needs and look for potential projects. 15 potential areas identified. Report accepted for publication as an AMIA 2018 informatics summit paper


  • Developed draft CDE spec, beginning with ONC 2015 CCDS and in collaboration with MDEpiNet.
  • Secured Pew constract with DCRI/PCPI
  • Conducted working session at PCPI Spring Conference


  • Collaborating with DCRI and MDEpiNet to complete common clinical data element set, beginning from ONC 2015 CCDS and what is already in FHIR
  • Refining common clinical data set specifications
  • Recruiting health systems participating in VQI, CathPVI registries
  • Exploring potential sources of funding

Next steps

  • Pilot the data set in registries and source data systems
  • Implement in VQI, CathPVI registries, measure cost to implement before/after results
  • Implement in participating health system EHRs, measure cost and results
  • Begin process of making these standards available in HL7 for others to use by updating the CCRF DAM to include these standards and developing an implementation guide based on FHIR that registry and source data system owners can implement these data standards in their systems
  • Study current variance in registry data models with regard to these data elements, loo at the impact of the pilot on things like need for custom interfacing, chart abstraction, and data quality
  • Submit study results for publication
  • Update the doman analysis model and develop the FHIR implementation guide for these data elements
  • Push for adoption in NQRN registries
  • Use lessons learned to look for the next opportunity

 For more information contact Chrystal Price at


HL7 Common Clinical Registry Framework Domain Analysis Model

ONC 2015 Common Clinical Dataset

Registries on FHIR draft common clinical data set

NQRN Webinar: Registry Interoperability (October, 2017)

HIMSS: What is Interoperability?

Registries in FHIR Update (April, 2018)

Registries on FHIR Summary Report (May, 2018)


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