Registry Data Standards

Registry Data Standards

The Common Healthcare Data Interoperability Project is a collaboration between the Duke Clinical Research Institute (DCRI) and The Pew Charitable Trusts (Pew) to advance interoperability among electronic health records and registries.


Identifying Existing Registry Standards

Rather than create a new data standard, this project relied on predicate content included in the Office of the National Coordinator for Health Information Technology 2018 US Core Data for Interoperability, Health Level 7 Fast Healthcare Interoperability Resources profiles and resources, and reference the work of standards development organizations, such as LOINC and other groups that have addressed aspects of the data interoperability problem.

Working with Pew, the DCRI:

  1. Identified the clinical concepts that appear frequently across multiple registries,
  2. Determined how those concepts should be best represented as standardized common data elements (CDEs), and
  3. Created an implementation guide for database developers so that registries and health information technology developers can implement the standardized CDEs with the least amount of effort.

See the listing here.

Don't Reinvent the Wheel;
Use Our Work

The DCRI was pleased with the  robust participation and adoption from clinical societies represented. We encourage those societies looking to start up new registries to consider using the standardized CDEs from this project.

Final project deliverables including an implementation guide which instructs you on how you can adopt the standards are published here. Questions may be emailed to Rebecca Wilgus, Project Leader.

The views expressed herein are those of the author(s) and do not necessarily reflect the views of The Pew Charitable Trusts.

Our Approach

Registry Data Collection Forms and Data Dictionaries Represented

The DCRI has received data collection forms and data dictionaries from more than 30 registries and begun the process of anonymizing, abstracting and cataloging the data elements from each.

Introduction to the Improving Healthcare Data Interoperability Project

Access the slides here, download the transcript, or view the webinar replay below.

Review of the Draft Recommendations and Feedback Instructions

Access the slides here, download the transcript, or view the webinar replay below.

Framework for Adoption and Implementation

In August 2018, the DCRI and Pew hosted a meeting in Washington, DC to bring together registry stewards to review the work product and discuss a framework for adoption and implementation.

Download the transcript

Problem Statement & Objectives (4:31)
Design & Goals of the Project (15:26)
Common Clinical Concepts as Data - Environmental Scan & Gap Analysis (18:00)
(Break from 1:01:50 to 1:16:18)
Data Element Abstraction Process and Findings (1:16:50)
National Data Models & FHIR Review (1:43:23)
Candidate Common CDEs (1:58:15)
Proposed Medication Model (3:02:03)


Working Group Sessions

Working Group Report Outs and Discussion

Download the transcript

Workgroup 1: Return on Investment (begins at 00:44)
Workgroup 2: Communications (begins at 17:32)
Workgroup 3: Technical Challenges (begins at 29:12)
Workgroup 4: Adoption Strategies/Policy (discussion at 35:45)
Wrap-up & Next Steps (begins 52:18)

Principal Investigator

James E. Tcheng, MD
Professor of Medicine
Professor of Community and Family Medicine (Informatics)
Duke Clinical Research Institute
Duke University Health System


Joseph P. Drozda, Jr., MD, MACC
Director of Outcomes Research
Sisters of Mercy Health System


John R. Windle, MD
The Richard and Mary Holland Distinguished Chair in Cardiovascular Sciences,
Professor, Internal Medicine
Division of Cardiovascular Medicine
University of Nebraska Medical Center

Project Leader

Rebecca Wilgus, RN, MSN
Informatics Project Leader
DCRI Data Solutions
Duke Clinical Research Institute
Duke University Health System

Email Rebecca with project questions.


  • Seth Blumenthal, Physician Consortium for Performance Improvement (PCPI)
  • Davera Gabriel, RN Duke Clinical Research Institute
  • Anne Heath, Duke Clinical Research Institute
  • Julia Skapik, MD; Cognitive Medical Systems
  • Mary Williams, Duke Clinical Research Institute
  • Tom Windle, University of Nebraska Medical Center

Support for this project was provided by The Pew Charitable Trusts

About The Pew Charitable Trusts

The Pew Charitable Trusts uses evidence-based, non-partisan analysis to solve today's challenges. They are driven by the power of knowledge to solve today's most challenging problems. Pew applies a rigorous analytical approach to improve public policy, inform the public, and invigorate civic life.