SECURE-SCD: A registry of patients with sickle cell disease and COVID-19

Thursday, August 27, 2020

The SECURE-SCD registry was designed to collect and disseminate information on patients with sickle cell disease (SCD) who develop COVID-19.

Two of the registry’s organizers are Amanda Brandow, DO, and Julie Panepinto, MD, both of the Medical College of Wisconsin/Children’s Wisconsin in Milwaukee.

In this episode, Dr. Brandow and Dr. Panepinto discuss SECURE-SCD and its findings with host David H. Henry, MD.

SECURE-SCD is an online registry that was launched in March 2020. On the registry’s website (https://covidsicklecell.org/), health care providers can submit deidentified data on patients with COVID-19 and SCD.

The submitted data are then published on the website. Updates are made regularly, usually every Friday. The following information from SECURE-SCD was current as of recording this episode.

  • SECURE-SCD includes data on nearly 300 SCD patients with COVID-19.
  • Eight countries and more than 25 U.S. states are represented in the registry.
  • The average patient age is 25.5 years, with the largest population clustered around ages 18-30 years.
  • The most common presenting symptom is pain, which has been reported in more than half of patients.
  • About a third of patients presented with pneumonia and/or acute chest syndrome.
  • Stroke has been relatively uncommon in the population.
  • Three cases of thrombosis have been reported. However, information on thrombosis was not collected initially, so cases may be higher.

For more details, see the recent publication of SECURE-SCD data: Panepinto JA et al. Coronavirus disease among persons with sickle cell disease, United States, March 20–May 21, 2020. Emerg Infect Dis. 2020 Oct. doi: 10.3201/eid2610.202792.

To view the latest data, visit https://covidsicklecell.org/updates-data/.

Disclosures:

Dr. Brandow, Dr. Panepinto, and Dr. Henry have no financial disclosures relevant to this episode.

Show notes by Sheila De Young, DO, resident at Pennsylvania Hospital, Philadelphia.

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David Henry, MD
David Henry, MD, FACP, is a clinical professor of medicine at the University of Pennsylvania and vice chairman of the department of medicine at Pennsylvania Hospital in Philadelphia. He received his bachelor’s degree from Princeton University and his MD from the University of Pennsylvania, then completed his internship, residency, and fellowship at the Hospital of the University of Pennsylvania. After 2 years as an attending in the U.S. Air Force, he was drawn to practicing as a hem-onc because of the close patient contact and interaction, and his belief that, win or lose with each patient, one can always make a difference in their care and lives. Follow Dr. Henry on Twitter: @davidhenrymd. Dr. Henry reported being on the advisory board for Amgen, AMAG Pharmaceuticals, and Pharmacosmos. He reported institutional funding from the National Institutes of Health and FibroGen.



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