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Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion
source: Secure-SCD Registry
year: N/A
summary/abstract:This registry is designed to capture pediatric and adult COVID-19 cases that are occurring across the world in patients living with sickle cell disease. The goal of the registry is to report on outcomes of cases of COVID-19 in this population of patients. We are asking providers caring for these patients to report all of their cases of COVID-19 to this registry. We expect the reporting of a case to take approximately 5-10 minutes.
With our sickle cell disease community worldwide, working collaboratively, we hope to quickly identify the impact of COVID-19 on patients with sickle cell disease and understand the impact of risk factors such as genotype, prior sickle cell disease complications, or sickle cell disease related medications, on health outcomes.
This is an international effort—we are counting on robust participation and collaboration. We will provide the sickle cell disease community with regularly updated summary information. The registry contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.