Registry Science and Research Initiative

Program Overview:

As part of CMSS’ Digital Transformation strategic priority, the goals of the Registry Science and Research Initiative are to advance CMSS member knowledge and expertise in clinical registries and research through shared learning and collaboration with stakeholders in the broader clinical and research environment.

Advisory Committee:

An Advisory Committee comprised of specialty society staff, society volunteer leadership, and federal agency representatives will advise on and seek to address key topics of interest to specialty societies in clinical registries and research with the goals of:

  • advancing CMSS member knowledge and expertise,
  • informing future collaborative CMSS activities, and
  • identifying issues that require more focused development.

The Advisory Committee includes a blend of specialty society staff and volunteer leadership and federal agency representatives.

  • Kyle Cobb, Officer of the National Coordinator for Health Information Technology
  • Elizabeth Garrett-Mayer, American Society of Clinical Oncology
  • Kathleen Hewitt, American Society of Hematology
  • Cliff Ko, American College of Surgeons
  • Steve Labkoff, American Medical Informatics Association
  • Danica Marinac Dabic, EpiNet/Food & Drug Administration
  • Greg Martin, Society of Critical Care Medicine
  • Matt Nielsen, American Urologic Association
  • Michelle Schreiber, Centers for Medicare & Medicaid Services
  • Christa Singleton, Centers for Disease Control & Prevention
  • James Tcheng, Duke University

CMSS Quality Professional Peer Group (PPG) Leads:

  • Matthew Popovich, American Society of Anesthesiology
  • Samantha Shugarman, American College of Radiology
  • Karen Johnson, American Urologic Association

About the Webinar Series:

A webinar series is being planned to address key topics of interest in clinical registries and research to advance the above goals. The webinars are being scheduled as follows:

July 25, 2022:                   Overview of the United States Core Data for Interoperability and USCDI+ for Quality 
August 29, 2022:             Advancing FHIR in Clinical Registries and Research
September 22, 2022:   Defining and Creating the Registries of the Future
October 2022:                  Sustainability and Member Engagement
November 2022:              Intended Uses of Registries
December 2022:              Data Advancement, Privacy, and Security
January 2023:                  Models for Longitudinal Assessment

All webinars are open to CMSS members and the public and are free to attend. Sessions will be recorded and made available to registrants. Check back for more information as dates and times are confirmed.

Upcoming Webinars:

Defining and Creating the Registries of the Future

September 22, 2022
11:30 am – 1:00 pm ET

About this session:

This session will provide a vision for CMSS members to innovate clinical registries by leveraging federal data standards, patient-generated data, multi-stakeholder governance and involvement, data quality and use of standards, and evolving strategies for sustainability.

Session Leaders:

Kathleen Hewitt, DNP, RN, Senior Director, ASH Research Collaborative Data Hub and Learning Community
Danica Marinac-Dabic, MD, PhD, MMSc, FISPE, Associate Director, Office of Clinical Evidence and Analysis

Panelists:

Art Sedrakyan, MD, PhD, Professor, Director of Institute for Health Technologies and Interventions, Weill Cornell Medical College; Vice-Chair, IDEAL initiative
Phil Goodney, MD, MS, Chair, VQI-VISION CRN
Bill Wood, MD, MPH, Professor of Medicine, University of North Carolina at Chapel Hill; Senior Medical Advisor, ASH Research Collaborative; Chair, ASH Research Collaborative Data Hub Oversight Group

Register: https://us06web.zoom.us/webinar/register/WN_DNhol00VTFGhnxB9m7RsnA

Past Webinars:

Overview of the United States Core Data for Interoperability and USCDI+ for Quality – July 25, 2022

About this session:

The Office of the National Coordinator for Health Information Technology (ONC) will provide an overview of the United State Core Data for Interoperability (USCDI) and USCDI+. This webinar will enable CMSS members and other interested stakeholders to better understand the role of the USCDI+ and related interoperability initiatives. It will also provide a forum for specialty societies to ensure that key data elements important to their clinical specialty are represented in the USCDI+ and ask questions of ONC staff.

Watch the recording(Access Passcode: 9?7z?.5.)

View the slides

Review additional Q&A

Advancing FHIR in Clinical Registries and Research – August 29, 2022 

About this session:

During this session, we will provide an overview of Fast Healthcare Interoperability Resources (FHIR) – what it is and its potential for clinical registries and research. This webinar will enable CMSS members and other interested stakeholders to better understand how registries can leverage this standard. It will also discuss where the gaps are in advancing FHIR and the potential roles and partners for specialty societies in this space.

Speakers:

Aneesh Chopra, President, CareJourney
Brian Bialecki, Director of IT Standards and Interoperability, American College of Radiology
Christopher Treml, Director, Data Standards Institute, American College of Radiology
Marti Velezis, Data Standards and Interoperability Consultant (FDA), Chair/Coordinated Registry Network (CRN) Architecture Task Force (MDEpiNet)

Watch the recording (Access Passcode: 4GKjn!mt)

View the slides

Key Questions the Registry Science and Research Initiative will address:

How do we define and create the registries of the future?

  • What we consider a registry defines what it can accomplish and what we can expect from it.
  • Creating an updated definition of a registry is foundational to these discussions and what can be achieved.
    • Can be built on the previous work by AHRQ in symposia and in books, and by NQRN before becoming part of CMSS but should reflect the current and future states too.

What are the intended goals of registries? How will they continue to advance and evolve? How do we ensure that the data collected are appropriate for the intended use(s)?

  • What are the implications of the primary and secondary uses of registry data?
  • What are the responsibilities and guardrails or barriers for each of these uses? Are we transparent about the data collected and for what uses?
  • What are the strategies to ensure that registries have implemented the necessary guardrails?
  • What are the current models for engagement in research, clinical registries, and education with patient organizations?

How do you ensure sustainability and promote member engagement?

  • Define business case and value for registries and develop rules of the road for trusted registry stewards.
  • How can we build on previous work and learnings (e.g., data models, modular approaches)?
  • What are success stories on how registries engage membership to meet the registry goals?

How do registries ensure responsible and transparent stewardship of the data?

  • Registries must deal with multiple data issues such as the balance between de-identified data and data sharing while also ensuring patient privacy.
    • Topics include security and privacy of the data, patient matching approaches, and the value of linking data across registries and datasets.
  • Explore legal and regulatory policies that facilitate the creation and sustainability of registries while protecting the basic privacy and confidentiality required by HIPAA.

When and how will registries capture data required for advanced and evolving uses?

  • How can registries interface with multiple data sources, including electronic health records and patient-generated health data? What is the role and potential of artificial intelligence/natural language processing?
  • How can registries be structured to accommodate the necessary changes in data collection over time? Are there best practices that can be shared?

How can registries develop model(s) for longitudinal assessment, including patient-reported outcomes?

Program Contact:

Heidi Bossley, CMSS Quality Consultant, hbossley@cmss.org