Closure of reporting to SECURE-SCD

Dear Sickle Cell Disease Community

We want to thank you for your support of the SECURE-SCD registry. This initiative, to understand the impact of COVID-19 on the individuals with sickle cell disease, could not have been possible without coming together as a community. We are proud and extremely grateful for the journey and the lessons this effort has taught us.

Early in the pandemic, data from SECURE-SCD facilitated the classification of sickle cell disease as a high-risk condition for severe COVID-19 outcomes by the Centers for Disease Control and Prevention (CDC) and later as a prioritized group for vaccination. We learned that a history of frequent pain is a risk factor for hospitalization and serious COVID-19 illness in both children and adults with sickle cell disease. We also learned that for children with sickle cell disease, heart and lung comorbidities are risk factors for hospitalization and serious COVID-19 illness. In addition, renal comorbidities in children with SCD were associated with serious COVID-19 illness. We described that many patients experienced pain as the presenting symptom of COVID-19 illness, which supported testing for COVID-19 in individuals with sickle cell disease that seek treatment for pain. Our data have also provided some evidence that hydroxyurea did not appear to negatively influence COVID-19 outcomes, providing some early reassurance that it was safe to continue the drug early in the pandemic.

The process of developing and managing the SECURE-SCD Registry has provided valuable lessons and insight for future projects. SECURE-SCD highlighted the importance of near-real time reporting, active dissemination, public availability of the aggregated data, and adaptability to new circumstances and challenges the pandemic brought. Most importantly, this effort emphasized how collaborative effort helps to inform policy makers and thereby protect vulnerable populations such as individuals with sickle cell disease.

As new questions have arisen in the more recent stages of the pandemic, the focus has shifted from understanding COVID-19 outcomes and identifying risk factors for serious COVID-19 illness to evaluating effectiveness of the vaccines and long-term consequences of COVID-19. As SECURE-SCD was designed to address initial questions about the effects of COVID-19 on individuals with sickle cell disease when information and data were severely limited, we believe that SECURE-SCD has served its purpose. Thus, we believe it is time to close reporting to the SECURE-SCD Registry. We are immensely grateful for all of the interest and contributions to the SECURE-SCD Registry and proud of the impact that this international collaborative effort has had on supporting the sickle cell disease community. Again, this initiative would not have been possible without your support. This effort is a true testament to the definition of TEAM – Together Everyone Achieves More. Thank you, TEAM.

With gratitude,

Amanda Brandow, DO, MS, Medical College of Wisconsin/Children’s Wisconsin

Lana Mucalo, MD, Medical College of Wisconsin

Julie Panepinto, MD, MPH, Medical College of Wisconsin/Children’s Wisconsin*

Ashima Singh, PhD, Medical College of Wisconsin

*Part of the SECURE-SCD when at MCW/CHW, until May 2021