Medical College of Wisconsin Receives Funding from Doris Duke Charitable Foundation to Expand Research on US Sickle Cell Disease Patients With COVID-19

Milwaukee, Aug. 20, 2020 - The Medical College of Wisconsin (MCW) and the Doris Duke Charitable Foundation (DDCF) jointly announce that MCW is receiving a grant of $100,000 from DDCF to expand a secure, rapid-response surveillance registry, which collects de-identified data on individuals with sickle cell disease (SCD) and COVID-19, and to aggregate and analyze the collected data.

The purpose of this grant is to expand the registry, which is overseen by Dr. Julie Panepinto, a professor of pediatrics and hematology/oncology/bone marrow transplantation at MCW, to include children and adults in Africa with the same diagnoses and to support investigations of associations between the two diseases. Research will enable understanding of health outcomes and longer-term impact of COVID-19 infections and treatments on SCD-specific progression and therapies. Prior studies have shown that people with SCD have higher rates of mortality from influenza and are at increased risk from respiratory pathogens, which indicates that this population may be particularly vulnerable to COVID-19.

“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,” said Dr. Panepinto. “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.”

Sickle cell disease is the most common inherited blood disease, affecting approximately 100,000 patients in the U.S. and millions of people in Africa. Patients with SCD produce abnormal hemoglobin that causes red blood cells to become rigid and deform into a sickle shape, clumping together and blocking flow within blood vessels and resulting in severe pain, among other problems. This disease, which is most prevalent in people of African and Hispanic descent, affects nearly every organ system in the body, and is associated with an early death, with the average global life expectancy estimated to be about 45-55 years old.

“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,” said Dr. Betsy Myers, program director for medical research at the Doris Duke Charitable Foundation. “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.”

Working collaboratively, researchers hope to quickly identify the impact of COVID-19 on patients with sickle cell disease and understand the impact of risk factors on health outcomes from the information found in the registry. Researchers know that SCD patients are a population which may be at increased risk of infection. Impact and consequences of novel COVID-19 affecting patients with SCD are emerging from the preliminary data from the registry.

Health care providers are being notified of the registry through professional and patient advocacy networks, and a link to the registry is available on the CDC website.