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ASH Research Collaborative COVID-19 Registry for Hematology

December 2, 2020

An Ongoing Effort to Gather Data to Better the Care of Patients With Hematologic Conditions Who Test Positive for COVID-19

In April of 2020, as the COVID-19 public health crisis exploded in our country, the ASH Research Collaborative (ASH RC) Data Hub set to work to develop a COVID-19 Registry. At first, the Registry captured data on patients who tested positive for COVID-19 and had been or were being treated for a hematologic malignancy. In June, the Registry expanded to collect data on patients with COVID-19 who have or previously have been treated for nonmalignant hematologic conditions. As data are received, near-real-time observational data summaries are publicly reported on the ASH RC’s website for clinicians on the front lines of the pandemic.

The COVID-19 pandemic has affected hematologists and the way they practice significantly. Dr. Mikkael Sekeres, part of the working group that developed the Registry, shared his experience. He mentioned that during the first wave of the pandemic, hematologists were deliberate about which clinical trials were kept open based on patients’ needs and the fact that their potential benefits outweighed the risks of COVID-19. As they implemented better processes and protections for patients and providers, several trials resumed full operations. “A silver lining to the pandemic, as we will be presenting in an abstract at the ASH annual meeting this year, is that our research coordinators have become more efficient since working from home and being able to conduct monitoring visits remotely,” he explained, “which we believe has translated into being able to open more clinical trials even faster than previously.”

Dr. Sekeres elaborated on these efforts saying, “COVID-19 is the health crisis of our time, and one that we suspected would affect patients with hematology issues differently from people in the general population. We felt it was our duty to our patients, to other hematologists, and to ASH to be proactive in developing a registry to meet everyone’s needs in real time, as the pandemic crisis was unfolding.”  Drs. Lisa Hicks and William Wood took the lead on these efforts and asked other experts, including Dr. Sekeres, to determine what information would best help hematologists care for their patients. Dr. Sekeres explained that from the beginning, the group of experts set as their guiding principle collecting the right information and asking the right questions. He said, “To my knowledge, this is the only registry devoted solely to patients with hematology diagnoses, and thus is sensitive to their unique problems.”

Originally, the Registry only captured data on patients with hematologic malignancies. Dr. Sekeres explained that these patients are different from those with other cancers because they often have compromised immune systems, either as a consequence of cancer itself or of the drugs used to treat those cancers. “This theoretically leaves them particularly susceptible to complications from a COVID-19 infection,” he said. The working group wanted to quantify that risk and see if there were decisions made about these patients’ care during a COVID-19 infection that were different from other patients. “It turns out that their risk of dying is manifold higher than people without hematologic malignancies infected with the virus,” explained Dr. Sekeres, “and that they appear more likely to eschew aggressive care for their COVID-19 infection, likely because their cancer is advanced.”

Co-chair of the ASH RC COVID-19 Registry for Nonmalignant Hematology Task Force, Dr. Deborah Siegal, has been involved with this initiative since the Spring of 2020 when data started to emerge that pointed to the importance of hematologic manifestations of COVID-19, including abnormal coagulation and thrombosis, especially in hospitalized patients.Dr. Siegal explained that the Registry is meant to capture information that will help practicing clinicians understand how the pandemic is affecting individuals with malignant and non-malignant hematologic conditions. “It will also help researchers identify areas for future research,” she added. She further elaborated, “We collect de-identified information about demographics, COVID-19 (diagnosis, treatments, outcomes), and underlying hematologic conditions (and their treatments), and hematologic complications.” The non-malignant portion of the Registry captures data about individuals with hematologic conditions, such as bleeding disorders, hemoglobinopathies, immune thrombocytopenia, aplastic anemia, and venous thromboembolism, who are diagnosed with COVID-19. “It also collects information about individuals who develop hematologic complications of COVID-19, such as coagulopathy and thrombosis,” added Dr. Siegal to highlight the importance of this component of the Registry.

Like Dr. Sekeres and many hematologists across the globe, Dr. Siegal has seen a significant impact on her practice by the COVID-19 pandemic. “I practice thrombosis medicine and there have been important changes to the way we care for patients with increasing use of telephone or virtual assessments,” she explained. While these methods reduce the risk of exposure for patients and staff and have been largely successful, Dr. Siegal pointed out that they are not always a substitute for in-person assessments, especially when faced with complex clinical decisions that require long discussions, or when a patient requires assistance to communicate with the health care team. Additionally, Dr. Siegal finds that there has been a significant impact on her research activities. “Non–COVID-19 research was put on hold for many months in the Spring and Summer of 2020. This was difficult for researchers whose activities were abruptly stopped with no clear timeframe for resumption,” she explained. Dr. Siegal also added that it was difficult for research staff, many of whom were laid off. “However, we also witnessed the resiliency of the hematology community which joined together with meaningful collaborations that led to the rapid development and implementation of observational studies, randomized trials, and evidence-based guidelines,” she concluded. This Registry is currently actively engaging sites, urging them to submit batched data.

To learn more about the ASH RC COVID-19 Registry for Hematology, access data summaries, or enter a case, visit www.ashresearchcollaborative.org/s/covid-19-registry.

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