About the Webinar Series:

With funding from the Gordon and Betty Moore Foundation and in collaboration with the Association of Academic Medical Colleges, CMSS will support a new 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.

The series was launched at the CMSS Virtual Spring Meeting – Covid-19 and Clinical Registries Session on May 1, and this session recording is available below. The webinar series is free to attend but registration is required. Recordings will be available to registrants and posted to our website for on-demand viewing.

Upcoming Webinars:

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

August 6, 2020 | 12:00 – 1:30 pm ET (11:00 am – 12:30 pm CT)

  • 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

August 12, 2020 | 1:00 – 2:30 pm ET (12:00 – 1:30 pm CT)

  • 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.
  • To learn more about the panelists or to share webinar details with others, view the August 12 Patient Engagement Webinar Flyer

Using Clinical Registries to Address Disparities in Covid-19

September 1, 2020 | 2:30 – 4:00 pm ET (1:30 – 3:00 pm CT)

  • 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
    • Lisa Cooper, MD (invited); Bloomberg Distinguished Professor, Equity in Health and Healthcare, Professor of Medicine, Johns Hopkins Bloomberg School of Medicine
    • Eliseo Perez-Stable, MD (invited); Director of the National Institute on Minority Health and Health Disparities (NIMHD), National Institutes of Health (NIH)
    • 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

Past Webinars:

Covid-19 and Clinical Registries

May 1, 2020

  • 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

July 8, 2020 

  • 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

July 17, 2020 

  • 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

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.