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

Video Transcription

Video Summary

The webinar, led by Helen Burstyn, the CEO of the Council of Medical Specialty Societies (CMSS), discussed the vital role of clinical registries in improving pandemic response and treatment, especially in light of COVID-19. This session, the third in a series sponsored by the Gordon and Betty Moore Foundation and AAMC, focused on how to advance clinical registries for better clinical research and care optimization.<br /><br />Key highlights included presentations from experts who shared their experiences and initiatives with various registries:<br />1. <strong>Cliff Koh (American College of Surgeons)</strong> discussed how early pandemic stages showed severe surgical outcomes among COVID-19 patients, leading to the creation of a basic COVID registry. This registry collects patient demographics, presenting symptoms, comorbidities, treatments, and outcomes, focusing on surgical and emergency data.<br />   <br />2. <strong>Liz Garrett-Mayer (American Society of Clinical Oncology, ASCO)</strong> presented ASCO's registry, aimed at understanding the impact of COVID-19 on cancer patients. ASCO's registry collects data from patients with confirmed COVID-19 diagnosis undergoing active cancer treatment. It includes both central data collection and the option for local data collection in RedCap, facilitating longitudinal follow-up.<br /><br />3. <strong>Greg Martin (Society of Critical Care Medicine, SCCM)</strong> introduced the Viral Infection and Respiratory Illness Universal Study (VIRUS) registry, rapidly implemented to capture data on critically ill COVID-19 patients. Utilizing the ISERIC case report form and RedCap for data collection, the registry now spans numerous sites globally, aiming to inform real-time clinical decision-making and research.<br /><br />Michael Howell from Google, offering a tech perspective, emphasized that the primary barriers to effective registry implementation are social rather than technical. He advocated for better data standardization, automated data extraction, and stronger socio-technical collaboration to enhance registry functionality and integration.<br /><br />The panelists, responding to audience questions, highlighted the need for harmonized data elements, automated data collection, and the role of centralized patient identifiers in integrating disparate datasets. They recognized the potential of cloud-based platforms, machine learning, and broader interoperability standards to transform registry-based research and patient care outcomes in future pandemics.

Keywords

Helen Burstyn

CMSS

clinical registries

pandemic response

COVID-19

Gordon and Betty Moore Foundation

AAMC

surgical outcomes

cancer treatment

critical care

data standardization

automated data extraction

machine learning