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ASH Research Collaborative’s Growth and Success in 2021 (1) (1)

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The ASH Research Collaborative (ASH RC), composed of the Sickle Cell Disease Clinical Trials Network (SCD CTN), Data Hub’s SCD and Multiple Myeloma Programs, and an SCD Learning Community, has seen significant growth throughout 2021. The number of onboarded Clinical Trials Network consortia has grown in 2021 from four to 12 and currently represents 60 geographically diverse clinical sites and more than 25,000 children and adults living with SCD. Each consortium within the network is built on a “Hub and Spoke” model consisting of a clinical trials unit that serves as the lead clinical trial site or hub that provides administrative expertise and infrastructure to support several clinical research sites (CRS) or spokes, which can be a hospital, outpatient clinic, community health center, private practice, or local health department clinic, within each consortium. The CTN sites will enroll children and adults living with SCD within their patient populations in clinical trials as part of an unprecedented national effort to streamline operations and facilitate data sharing with the goal of expediting the development of new therapies for SCD.

The SCD CTN is working to accelerate progress by gathering a community of research-ready clinical sites and expert investigators, connecting industry sponsors to sites and the community, leveraging real-world data to support clinical trials through the other component of the ASH RC – the Data Hub, and facilitating efficient clinical trial startup. Engagement with the SCD community is foundational to the SCD CTN; therefore, the ASH RC provides support for local SCD Community Advisory Boards (CABs) at each CTN consortia to ensure that future efforts are informed by the needs and desires of those living with SCD and those caring for them, at both local and national levels.

The first study to be run through the CTN, The COVID-19 Vaccine Response in People Living with Sickle Cell Disease study, is currently enrolling patients. This observational study is designed to investigate the antibody response to the COVID-19 vaccine in a cohort of persons living with SCD and assess for vaccine-associated and SCD-related complications around the time of vaccination. The study will enroll 200 participants with SCD at up to 20 CTN sites. Visit the ASH RC booth in ASH Central (Hall 4C) at the Georgia World Congress Center (GWCC) for additional details. 

To learn more about the SCD CTN and the CAB model, plan to attend the Special Education session on Collaborative Hematology Networks (with live Q&A Monday, December 13, at 2:45 p.m. Eastern time [ET], in B211-B212 of the GWCC). Visit the ASH RC Booth or find information online at

The SCD Data Hub saw the enrollment of more than 30 sites during 2021. A brand-new site portal was launched for participating sites and includes a confidential dashboard, data quality report, and a cohort analyzer tool. Stop by the ASH RC Booth to see a demo of the SCD Site Portal and learn more about getting involved. Currently, enrollment in the Data Hub’s SCD program is limited to sites participating in the SCD CTN; however, if you are interested in your institution being on the waiting list you can request to be added at the booth. ASH recently launch its first pilot SCD Learning Community, partly supported by a grant from the U.S. Department of Health and Human Services. The design of the Learning Community has been led by people living with SCD, family members, clinicians, and researchers working together and using data to enhance care and improve patient outcomes. Sites currently participating in the Data Hub’s SCD program are eligible to participate. Learn more at the booth and watch a recent webinar ( for additional details.

The ASH RC Data Hub Multiple Myeloma Program also launched this year with enrollment currently underway. Partly funded by the Centers for Disease Control and Prevention, the program is expanding to include a COVID module soon. Participating sites will have access to a confidential dashboard and data quality in early 2022. Stop by the ASH RC booth to learn more about the Data Hub’s Multiple Myeloma program and how you can get involved. Also, you won’t want to miss the session, “The Role of Real World Data Collection in Hematologic Malignancies” chaired by ASH President Martin Tallman, MD (Sunday, December 12, at 4:30 p.m. ET, B312-B314 of the GWCC and available on-demand via the virtual platform).

The ASH RC along with Innovative Genomics Institute collaborated with the U.S. Food and Drug Administration (FDA) to engage stakeholders to provide support for the development of the ASH RC’s Data Hub and explore methods for accelerating innovations for SCD with real-world evidence and FDA-regulated research. Visit for more information and don’t miss the session “Gene Editing + Real-World Data: A New Generation for Real-World Evidence,” on Monday, December 13, at 4:30 p.m. ET in Rooms C208-C210 of the GWCC (and on-demand via the virtual platform). 

Lastly this year, the ASH RC worked tirelessly and urgently to grow the COVID-19 Registry for Hematology which they launched in 2020 in response to the COVID-19 pandemic. Data for more than 1,100 patients have been entered into the Registry and public data summaries have been made available online ( Two abstracts that used data from this Registry will be presented at this year’s meeting: “Risks for Hospitalization and Death Among Patients With Blood Disorders From the ASH RC COVID-19 Registry for Hematology”  (abstract 3040) presented by Lisa Hicks, MD, MSc, and “Clinical Predictors of Outcome in Adult Patients with Acute Leukemias and Myelodysplastic Syndrome and COVID-19 Infection: Report From the American Society of Hematology Research Collaborative (ASH RC) Data Hub” (abstract 280) presented by Pinkal Desai, MD, MPH. A press briefing, “COVID-19, 20, 21: Profiling the Latest Risks for Patients With Blood Disorders in a Time of COVID,” moderated by Laura Michaelis, MD, and covering these two abstracts, will take place Saturday, December 11, at 12:30 p.m. ET in Room A315 of the Georgia World Congress Center. Listen to The Hematologist podcast episode 90 for an update on the ASH RC COVID-19 Registry for Hematology recorded in March of 2021. To learn more about the Registry, visit the booth, and to enter a case and view data summaries, go to

Mark your calendar to attend these sessions or save them on the virtual platform to binge watch after the meeting. Visit for the latest updates and follow the ASH RC on Twitter @ASHCollab.

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