Registry Science and Research Initiative

As a part of the 2021 digital transformation initiative, CMSS created the Registry Science and Research Initiative. The goals of this initiative are to advance CMSS member knowledge and expertise in clinical registries and research through shared learning, specifically via webinars on emerging topics of relevance to specialty societies.

Advisory Committee

CMSS formed an advisory committee who will advise on potential 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

Webinar series

Beginning in the summer of 2022, CMSS will host a series of webinars on six topics.

Session 1: 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.

Session 2: 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?

Session 3: 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 engagement membership to meet the registry goals?

Session 4: 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.

Session 5: 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?

Session 6: How can registries develop model(s) for longitudinal assessment, including patient-reported outcomes?