Next Generation Data Sharing

Next Generation Data Sharing Core Infographic

Value and Vision

Federated analyses of clinical data across CTSA Program hubs is one of the strongest potentials of the translational community network. Because the CTSA clinical data landscape can be heterogeneous in its structure, data quality, and data access, it is important that data harmonization and semantic technologies support innovative, collaborative phenotyping and analytics at scale. The Next Generation Data Sharing Core aims to develop an open-science ethos through harmonization of common data models and unite CTSA community data sharing with broader global efforts.

Research Strategy

Though CD2H embraces Fast, Healthcare, Interoperability Resources (FAIR), it does not intend to create an additional FHIR data or terminology server. The Next Generation Data Sharing Core aims to evaluate existing server offerings and establish their suitability as well-established programming for federated query across CTSA.

Because FHIR resources are deliberately underspecified, the goal is to leverage ontologies (data dictionaries) and binding work among the traditional data models in concert with the US Core FHIR Implementation Guide.


Community Core Objectives 

  1. Support interoperability of common data models 
  2. Explore HL7 FHIR as a canonical hub for data transformation and exchange
  3. Develop and apply standards, Common Data Elements (CDEs) and other data models 
  4. Realize community-developed terminology services for translational science 
  5. Advance clinical phenotype characterization

Presentations and Other Materials

Healthcare Open Terminology (HOT) Ecosystem project meetings are on hold at this time. Contact for future meeting information.

Active Projects

Collaborative Enhancement of the ACT Ontology

The Accrual to Clinical Trials (ACT) Ontology supports queries across multiple research institutions in the ACT Network, a nationwide federation of leading academic research institutions that share aggregate patient counts from electronic health record (EHR) data. Its development is funded by the NIH through the National Center for Advancing Translational Sciences (NCATS) and the Clinical and Translational Science Award (CTSA) program. It contains over 125 million patient records. Usability of the ACT ontology will improve the precision, recall, and reproducibility of identifying clinical cohorts in EHR data sets. 

Next Generation Data Sharing Core Infrastructure

This ongoing HL7 Community Engagement project focuses on clinical data model harmonization and terminology services for the CTSA hubs. The three areas of work being conducted within this project are:

1. Common Data Model Harmonization (CDMH) II: Common clinical data model harmonization;
2. Healthcare Open Terminology (HOT) Ecosystem: Value sets and terminology harmonizaiton;
3. HL7 Vulcan Accelerator: Defining/enhancing FHIR resources that connect real world data with regulated submissions;

Healthcare Open Terminology (HOT) FHIR Server

The Healthcare Open Terminology (HOT) Ecosystem, Fast Healthcare Interoperability Resources (FHIR) project establishes a unifying framework and scaffolding that allows terminological resources to be integrated, merged, and extended to meet requirements of the translational community.

Development and Dissemination of Cutting-edge Virtual Tools toward the Future Establishment of a National Biobank Network

This community project received support in Phase III as an incubator project, with the goal of further developing requirements and plans for implementation at a later date. As part of this process, CD2H assists in connecting the team members to other communities that have already established work or interest in this area. The Biobank project is designed to build on the BioCatalyst application to develop and disseminate an informatics ecosystem that empowers researchers to search, analyze, and share data associated with biospecimens. The goal is to foster collaboration and increase the impact of datasets derived from biospecimens as part of next-generation biobanking.

This is a community incubator project with the following goals: (1) work with Clinical Trials Registration and Results Reporting Taskforce; (2) explore creating API specification for IRB, CRMS, interchange, (3) ground on single IRB FHIR project

Archived Projects

Data Harmonization

This community coordination project aims to provide a data model adaptor for CTSA hubs to support multi-center research for the combining of data created from different data models.


This project provides a tool to search for biomarkers in EHR data (such as LOINC) of participating CTSA centers for conversion to Human Phenotype Ontology (HPO) codes, and will extend to additional phenotype sources in the EHR.

Core Leads

Emily Pfaff

Emily Pfaff, MSIS, PhD

University of North Carolina Chapel Hill
Next Generation Data Sharing Core Community Co-Lead