Welcome to SECURE-SCD

Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion Overview

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.

Please report only confirmed COVID-19 cases, and report after sufficient time has passed to observe the disease course through resolution of acute illness and/or death.

To report a case of COVID-19, click here.

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.

Key points:

  1. This is an international effort—we are counting on robust participation and collaboration.
  2. We will provide the sickle cell disease community with regularly updated summary information.
  3. The registry contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards.
  4. The Medical College of Wisconsin Human Research Protection Program has determined that storage and analysis of de-identified data does not constitute human subjects research as defined under federal regulations [45 CFR 46.102] and does not require IRB approval.

We hope you will actively contribute to this voluntary reporting system. Through broad scale participation and collaboration, we hope to be able to understand the impact of COVID-19 on the health of patients living with sickle cell disease.

In addition, please report cases to your local public health agency as appropriate.

If you have any questions, please contact us at: covid.sicklecell@mcw.edu.

To report a case of COVID-19, click here.

Julie A. Panepinto, MD, MS (Pediatric Hematology, Medical College of Wisconsin)
Amanda M. Brandow, DO, MS (Pediatric Hematology, Medical College of Wisconsin)
Ashima Singh, PhD (Epidemiologist, Pediatric Hematology/Oncology/Bone Marrow Transplantation, Medical College of Wisconsin)