Covid 19 and Clinical Registries-COVID-19 and Clinical Registries (Spring Meeting 2020)

Video Transcription

Video Summary

The webinar, organized by CMSS with funding from the Gordon and Betty Moore Foundation, focused on the significant role clinical registries play in advancing COVID-19 treatment and response. Highlighting the urgent need for data during the pandemic, the session introduced a new webinar series aimed at enhancing the use of clinical registries for COVID-19. Janice Hrolowski from AAMC will assist in planning future sessions. <br /><br />Key speakers included Dr. Cliff Koh from the American College of Surgeons, who discussed the ACS's COVID-19 registry and the integration of COVID data into existing registries, emphasizing the need for safe resumption of elective surgeries with data-driven guidelines.<br /><br />Dr. Etta Pisano from the American College of Radiology elaborated on new and existing registries, underscoring the importance of multidisciplinary collaboration and automated data collection. She advocated using established networks like CTSA and implementing federated models for integrated data sharing.<br /><br />Dr. Janouse Yazdani from the Global Rheumatology Alliance shared the formation of their registry to investigate outcomes for COVID-19 patients with rheumatic diseases, reflecting on the collaboration with other specialties and highlighting issues around COVID-19 testing.<br /><br />Dr. Esther Freeman from the American Academy of Dermatology presented on their dermatology-focused COVID-19 registry, emphasizing international collaboration and harmonization to improve data accuracy and research outcomes.<br /><br />Key discussions revolved around the need for standardized and automated data collection methods, centralizing data while ensuring cross-specialty collaboration, and addressing challenges like varied antibody testing accuracy. There was consensus on the urgency of building an integrated and responsive data infrastructure to better manage potential future waves of the pandemic. <br /><br />The session concluded with a call to action for further collaboration and innovation, leveraging existing networks and technological advancements to create a comprehensive pandemic response framework.

Asset Caption

Facilitator: Helen Burstin (CMSS)

Presenters:
Esther Freeman, MD, PhD (AAD/MGH)
Cliff Ko, MD, FACS (ACS)
Etta Pisano, MD (ACR)
Jinoos Yazdany, MD, MPH (ACRh)
Janis Orlowski, MD (AAMC)

In this session, four clinical leaders speak to their recent efforts to stand up Covid-19 specific registries, sharing their experiences and lessons learned with developing or converting registries to address the Covid-19 pandemic. Participants also discuss important questions for Covid-19 clinical registries that could be addressed in future webinars.

Keywords

clinical registries

COVID-19 treatment

data collection

pandemic response

multidisciplinary collaboration

automated data

integrated data sharing

elective surgeries

standardized methods

cross-specialty collaboration

data infrastructure

pandemic response framework