Grant Expands SCD Patient Registry of COVID-19 Infections to Include Africa

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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SECURE-SCD registry

The SECURE-SCD registry, which is collecting de-identified data on individuals with sickle cell disease (SCD) who develop COVID-19, will be expanding to include information on children and adults in Africa.

The expansion was funded by a $100,000 grant from the Doris Duke Charitable Foundation (DDCF) awarded to the Medical College of Wisconsin (MCW).

“By establishing and supporting the Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE)-SCD registry, we hope to learn more about the impact of COVID-19 outbreaks on sickle cell disease patients,” Julie Panepinto, MD, who oversees the registry and is a professor of pediatrics, hematology, oncology, and bone marrow transplantation at MCW, said in press release.

“In light of this emerging epidemic and the potential for future infectious disease epidemics, it is important to obtain a better understanding of the risk factors and natural history of this viral infection in this medically vulnerable population,” she said.

Betsy Myers, PhD, program director for medical research at the DDCF, added: “We are proud to support the Medical College of Wisconsin in the expansion of this registry to include children and adults in Africa, which is home to the largest population of sickle cell disease cases in the world, and we encourage health care providers to contribute to it.”

In addition to expanding the registry, the grant will fund studies to explore the relationship between SCD and COVID-19. Previous research has indicated that people with SCD are at increased risk for complications from influenza and other respiratory infections, which suggests greater susceptibility to COVID-19.

Besides analyzing large sets of data on how COVID-19 manifests in SCD, researchers can also look at health outcomes in the longer term, including the impact of COVID-19 on SCD progression and treatment.

“This repository of data provides a critical tool for helping the field better understand the impact of Covid-19 on individuals with sickle cell disease and for equipping health care providers with what they need to best deliver the appropriate treatments and counsel to their patients,” Myers said.

Additional information, including how to report a case of COVID-19, is available at the registry’s website, According to MCW, healthcare providers are being notified of the SECURE-SCD registry through professional and patient advocacy networks.