The Value of a Regional Living COVID-19 Registry and the Challenges of Keeping It Alive

Background: The need for rapid access to regularly updated patient data for hypothesis testing, surge planning, and epidemiologic investigations underscore the value of updated registries that clinicians, researchers, and policy makers can easily access for local and regional planning. We sought to create an adaptive, living registry containing detailed clinical and epidemiologic and outcome data from SARS-CoV-2-PCR-positive patients in our healthcare system. Methods: From 03/13/202 onward, demographics, comorbidities, outpatient medications, along with 75 laboratory, 2 imaging, 19 therapeutic, and 4 outcome-related parameters were manually extracted from the electronic medical record of SARS-CoV-2 positive patients. These parameters were entered on a registry featuring calculation, graphing tools, pivot tables, and a macro programming language. Initially, two internal medicine residents populated the database, then professional data abstractors populated the registry. When the National Center for Immunization and Respiratory Diseases released their COVID-19 case report form for public access, we adapted it and used it on a browser-based, metadata-driven electronic data capture software platform. Statistics were performed in R and Minitab. Results: At the time of this submission, 200,807 SARS-CoV-2 RT-PCR tests were performed on 107,604 distinct patients. 3699 (3.4%) of those have had positive results. Of those, 399 (11%) have had the more than 75 parameters full entered in the registry. The average follow-up period was 25 days (range 21-34 days). Age, male gender, diabetes, hypertension, cardiovascular disease, kidney disease, and cancer were associated with hospital admission (all p values < 0.01), but not ICU admission. Statin, ACEI-ARB, and acid suppressant use were associated with admission (all p values < 0.03). Obesity and history of autoimmune disease were not associated with need for admission. Supplemental oxygen, vasopressor requirement, and outpatient statin use were associated with increased mortality (all p values < 0.03). Conclusion: A living COVID-19 registry represents a mechanism to facilitate optimal sharing of data between providers, consumers, health information networks, and health plans through technology-enabled, secure-access electronic health information. Our approach also involves a diversity of new roles in the field, such as using residents, staff, and the quality department, in addition to professional data extractors and the health informatics team. However, due to the overwhelming number of infections that continues to accelerate, and the labor/time intense nature of the project, only 11% of all patients with COVID-19 had all parameters entered in the registry. Therefore, this report also offers lessons learned and discusses sustainability issues, should others wish to establish a registry. It also highlights the local and broader public health significance of the registry.