About the Webinar Series:

With funding from the Gordon and Betty Moore Foundation and in collaboration with the Association of Academic Medical Colleges, CMSS developed a webinar series to address key questions related to the rapid development, deployment and implementation of Covid-19 focused clinical registries and clinical repositories by specialty societies and academia. Read more about the goals of the CMSS webinar series.

On-Demand Webinars:

Covid-19 and Clinical Registries

  • Moderated by Helen Burstin, MD, MPH, MACP
  • Panelists:
    • Esther Freeman, MD, PhD; Director MGH Global Health Dermatology; Director, Covid-19 Dermatology Registry, American Academy of Dermatology
    • Clifford Ko, MD, MS, MSHS, FACS, FASCRS; Director, Division of Research and Optimal Patient Care, American College of Surgeons; Vice Chair and Professor of Surgery and Health Services, University of California, Los Angeles (UCLA)
    • Etta Pisano, MD; Chief Research Officer, American College of Radiology; Profession in Residence at Harvard Medical School, Beth Israel Deaconess Medical Center
    • Jinoos Yazdany, MD, MPH; Chief, Division of Rheumatology, San Francisco General Hospital, Director, COVID-19 Global Rheumatology Alliance
    • Janis Orlowski, MD, MACP; Chief Health Care Officer, Association of American Medical Colleges

COVID-19: Accelerating Real-Time Electronic Data Capture for Tracking, Learning and Improvement

  • Moderator:
    • Atul Butte, MD, PhD; Priscilla Chan and Mark Zuckerberg Distinguished Professor; Director, Bakar Computational Health Sciences Institute, University of California, San Francisco; Chief Data Scientist, University of California Health (UC Health)
  • Panelists:
    • Tellen D. Bennett, MD, MS; Section Head, Informatics and Data Science; Associate Professor, Department of Pediatrics, University of Colorado School of Medicine; Attending Physician, Pediatric Intensive Care Unit, Children’s Hospital Colorado
      Director, Informatics Core, Colorado Clinical and Translational Sciences Institute (CCTSI)
    • Andrew Ip, MD, MS; Outcomes and Value Research Division, John Theurer Cancer Center; Hackensack Meridian Health
    • Subha Madhavan, PhD, FACMI; Chief Data Scientist, Georgetown University Medical Center
    • Jessie Tenenbaum, PhD; Chief Data Officer, NC Department of Health and Human Services
  • This webinar will provide perspectives on:
    • What is required to accelerate availability and access to electronic data sources within registries, highlighting examples from Covid-19?
    • What data sources, traditional and novel, are captured and what is their potential to be used for real world evidence?
    • What commitments and resources are needed to access data in real time to address organizational and research needs?

Reflecting on Our Covid-19 Failures – A New Vision for Integrated Registries

  • Moderator:
    • Helen Burstin, MD, MPH, MACP
  • Panelists:
    • Elizabeth Garrett-Mayer, PhD; Division Director, Division of Biostatistics and Research Data Governance, Center for Research and Analytics (CENTRA), American Society of Clinical Oncology
    • Michael Howell, MD, MPH; Principal Scientist, Google
    • Clifford Ko, MD, MS, MSHS, FACS, FASCRS; Director, Division of Research and Optimal Patient Care, American College of Surgeons; Vice Chair and Professor of Surgery and Health Services, University of California, Los Angeles (UCLA)
    • Greg Martin, MD, MSc; Professor of Medicine, Emory University School of Medicine, Executive Associate Division Director, Division of Pulmonary, Allergy, Critical Care, and Sleep Medicine; President-Elect, Society for Critical Care Medicine
  • This webinar will provide perspectives on:
    • How past events (e.g., SARS) led organizations to be better prepared for Covid-19
    • The key shortcomings/gaps in infrastructures and data within hospitals that led them to create their Covid-19 registry
    • How technology can move the field forward
    • What steps are required to ensure that healthcare is proactive and prepared for the next event
    • Envisioning a future state of integrated registries, along with the key partners and the drivers that can assist in achieving this new vision

Deploying Cloud-based Platforms and Analytic Tools to Support Covid-19 and Beyond

  • Moderator:
    • William J. Marks, Jr, MD, MS-HCM; Head of Clinical Science & Head of Neurology, Verily Life Sciences; Adjunct Clinical Professor of Neurology & Neurological Sciences, Stanford University School of Medicine
  • Panelists:
    • David Glazer; Engineering Director, Verily Life Sciences
    • Andrea Ramirez, MD; Assistant Professor of Medicine, Vanderbilt University of Medicine
    • Chris Treml; Director of Operations, Data Science Institute, American College of Radiology
  • This webinar will provide perspectives on:
    • The promises of multi-dimensional data platforms
    • What analytic tools and techniques are available within and outside of healthcare that can be leveraged
    • How the lessons learned from Covid-19 can be applied more broadly and to the next generation of clinical registries

Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data

  • Moderator:
    • Susannah Fox; Principal, Internet Geologist LLC; Former Chief Technology Officer, US Department of Health and Human Services
  • Panelists:
    • Gina Assaf; Independent digital design consultant/Leading the Patient-Led Research Group within Body Politic
    • Hannah Davis; Researcher with the Patient-Led Research Group within Body Politic
    • Emily Sirotich; COVID-19 Global Rheumatology Alliance; Canadian Arthritis Patient Alliance; and Department of Health Research Methods, Evidence, and Impact, McMaster University
    • Gary Wolf; Co-Founder, Quantified Self
  • This webinar will provide perspectives on:
    • How people living with health conditions are reliable sources of information and can contribute to the advancement of society through research, particularly in the investigation of complex and novel diseases.
    • Preparing for the future of integrated registries, driven by key partners and data providers, including patients and caregivers.
    • Building a biomedical research enterprise that incorporates self-collected time-series observations generated by patients.
    • How networked patients can help amplify the work of clinical registries and guide frontline clinicians to the latest research.
  • Read Moderator Susannah Fox’s blog post on this session: Patient-led research is a key element of pandemic response

Using Clinical Registries to Address Disparities in Covid-19

  • Moderator:
    • Helen Burstin, MD, MPH, MACP
  • Panelists:
    • Kirsten Bibbins-Domingo, PhD, MD, MAS; Professor and Chair, Department of Epidemiology and Biostatistics; Lee Goldman, MD Endowed Chair in Medicine; Vice Dean for Population Health and Health Equity, School of Medicine University of California, San Francisco
    • Eliseo Perez-Stable, MD; Director of the National Institute on Minority Health and Health Disparities (NIMHD), National Institutes of Health (NIH)
    • Bill Wood, MD, MPH; Chair, Data Hub Oversight Group, ASH Research Collaborative; Associate Professor of Medicine, Division of Hematology, University of North Carolina at Chapel Hill
    • Clyde Yancy, MD, MSc, MACC, FAHA, MACP, FHFSA; Vice Dean, Diversity & Inclusion, Magerstadt Professor of Medicine, Professor of Medical Social Sciences, Chief, Division of Cardiology Northwestern University, Feinberg School of Medicine & Associate Director, Bluhm Cardiovascular Institute Northwestern Memorial Hospital
  • Overview:
    While Covid-19 has had a negative effect across the nation and the world, significant disparities in both incidence and outcomes have been identified, including by race, ethnicity, and socioeconomic status (SES).  Potential explanations include the varying effect of some risk factors, including cardiovascular disease and diabetes, as well as the impact of structural racism. In this webinar, we hope to explore important questions pertaining to disparities specific to Covid-19 that could significantly change the way we consider disparities in care and drive improvement strategies overall.

    • What can we learn from the health system’s incomplete and inaccurate capture of data on race, ethnicity and SES? What is needed to routinely capture and track these factors across all data systems, including clinical registries?
    • What are the opportunities to identify and track individual and community level risk factors that are predictors to poor outcomes (e.g., more essential front-line workers among black and Latinos)?
    • How can we effectively engage disadvantaged people and communities in clinical research and clinical registries? What strategies can be used to build and maintain trust in the work of our clinical registries and research?
    • How can we incorporate the assessment and discussion of structural racism into our research on disparities in care?
    • How can rapid-cycle research from clinical registries be used to move beyond just documenting disparities to driving reductions and improvements in care based on these data?

Advisory Committee:

The Advisory Committee includes a broad range of experts from clinical registries, research, big data, patient advocacy, and data science. We are grateful for their contributions.

  • Helen Burstin, MD, MPH, MACP; Chief Executive Officer, Council of Medical Specialty Societies; Clinical Associate Professor of Medicine, George Washington University School of Medicine
  • Atul Butte, MD, PhD; Priscilla Chan and Mark Zuckerberg Distinguished Professor; Director, Bakar Computational Health Sciences Institute, University of California, San Francisco; Chief Data Scientist, University of California Health (UC Health)
  • Susannah Fox; Principal, Internet Geologist LLC; Former Chief Technology Officer, US Department of Health and Human Services
  • Clifford Ko, MD, MS, MSHS, FACS, FASCRS; Director, Division of Research and Optimal Patient Care, American College of Surgeons; Vice Chair and Professor of Surgery and Health Services, University of California, Los Angeles (UCLA)
  • William J. Marks, Jr, MD, MS-HCM; Head of Clinical Science & Head of Neurology, Verily Life Sciences; Adjunct Clinical Professor of Neurology & Neurological Sciences, Stanford University School of Medicine
  • Greg S. Martin, MD, MSc; Professor of Medicine, Emory University School of Medicine, Executive Associate Division Director, Division of Pulmonary, Allergy, Critical Care, and Sleep Medicine; President-Elect, Society for Critical Care Medicine
  • Janis Orlowski, MD, MACP; Chief Health Care Officer, Association of American Medical Colleges
  • Etta Pisano, MD; Chief Research Officer, American College of Radiology; Profession in Residence at Harvard Medical School, Beth Israel Deaconess Medical Center
  • Daniel Yang, MD; Program Officer for the Diagnostic Excellence Initiative, Gordon and Betty Moore Foundation

Existing Covid-19 Clinical Registries and Repositories accepting patient data: 

The Infectious Diseases Society of America (IDSA), a CMSS member, is building an open-access directory of COVID-19 registries that are accepting patient data at this time.

View the IDSA Directory of Covid-19 Registries

Do you know of a registry that isn’t listed? Submit registry data on the IDSA website.