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The ASH Research Collaborative Sickle Cell Disease Research Network: past, present, and future
This report details the initiative’s mission, history, achievements to date, and its promising trajectory toward improving the lives of individuals affected by Sickle Cell Disease.
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Living with Sickle Cell Disease: New Data Hub Report
Explore real-world insights from 13,000+ people with SCD in the SCD Data Hub, shaped with guidance from our Community Advisory Board.
Download the Report
Smarter Insights. Better Care. Real-World Impact for Sickle Cell Disease
Explore how the ASH RC Data Hub is transforming hematology research with curated real-world data, driving innovation in sickle cell disease and beyond.
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Access Resources for Clinical Trial Participants
By participating in a clinical trial for sickle cell disease (SCD), you could help researchers learn more about the disease and create new treatments that can improve the lives of people with SCD.
Additional Resources
ASH Research Collaborative’s Real-World Evidence Consortium for SCD Goes Live with Duke Clinical Research Institute
The Real-World Evidence Consortium aims to develop consensus recommendations on clinical outcomes to improve care for individuals living with sickle cell disease.
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Real-World Evidence Initiative Reports Now Available
The Real-World Evidence Initiative is excited to share the final recommendations from the Genomic Therapies and the Coordinated Registry Network Work Groups. The reports chart out a future path for regulatory science and for genomic therapies.
Final Recommendations
Connect With Us on Social Media
Follow us on Twitter/X and Facebook as we share the latest updates from ASH RC and connect with those who are also working to improve the lives of people affected by blood diseases.
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Improving Research to Build a Brighter Future for People with Hematologic Conditions
Individuals living with hematologic conditions need more evidence-based options for managing their health and improving their quality of life. The ASH Research Collaborative® (ASH RC) is working to accelerate change by making it more efficient to conduct research, from increasing access to high-quality clinical data to making it easier for individuals with hematologic conditions to participate in studies.
The ASH RC is currently focused in two disease areas: One classical hematologic condition, sickle cell disease (SCD), and one malignant hematologic disease, multiple myeloma (MM).
At the heart of both programs are site-based Research Networks consisting of experts in their respective fields.
The SCD Research Network
fosters collaborative partnerships to accelerate progress in clinical research and improve outcomes for individuals living with SCD by expediting the development of therapeutics and generating high-quality evidence to support clinical decision-making.
Learn about the SCD Research Network
The MM Research Network
is committed to building relationships within the myeloma community, leveraging the power of real-world evidence, and prioritizing research to improve the lives of individuals living with multiple myeloma.
Learn about the MM Research Network
Both Networks are powered by real-world data (RWD) which we call
The Data Hub.
The Data Hub is designed to be the largest shared information resource with real-world data to serve the hematology community. Access to these data can accelerate research and development, support regulatory decision-making, and help clinics identify opportunities for quality improvement.
Learn about the Data Hub
Latest Announcements
News
Events
March 23, 2026
This report details the initiative’s mission, history, achievements to date, and its promising trajectory toward improving the lives of individuals affected by Sickle Cell Disease.
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2026-03-23 21:02:38
2026-03-23 21:02:38
The ASH Research Collaborative Sickle Cell Disease Research Network: past, present, and future
February 10, 2026
The ASH Research Collaborative (ASH RC) welcomes new directors to its Board of Directors and announces updates to Board leadership, effective January 1, 2026.
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2026-02-10 15:42:50
2026-03-23 10:42:35
ASH Research Collaborative Announces New Board Leadership and New Directors
January 26, 2026
Five early-career investigators are the recipients of the ASH RC SCD Data Hub Award, which is designed to support the next generation of SCD researchers. Under this award, advanced career SCD researchers will partner with and serve as dedicated mentors to early career investigators through every stage of project development, from concept to study completion.
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2026-01-26 12:02:15
2026-02-10 12:34:50
ASH Research Collaborative Selects Five Recipients of SCD Data Hub Award
December 8, 2025
A new study based on multi-site data from the ASH Research Collaborative (ASH RC) Data Hub showcases an automated approach to subclassifying similar genotypes of sickle cell disease using data from electronic health records.
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2025-12-08 08:00:49
2026-01-23 15:27:43
Automated Approach Uses ASH RC Data to Classify Sickle Cell Disease by Similar Genotype
December 8, 2025
New data finds that the sickle cell drug voxelotor was not associated with any clear indicator of harm to patients, but had limited benefits overall. The findings were based on data pulled from the ASH Research Collaborative (ASH RC) Data Hub.
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2025-12-08 08:00:30
2025-12-07 22:30:41
Real-World Analysis of Voxelotor Outcomes Finds No Clear Sign of Harm, But No Real Benefits
December 7, 2025
Research using data from the ASH Research Collaborative (ASH RC) Data Hub aims to define “functional high-risk” multiple myeloma, suggesting that newly diagnosed patients whose disease progresses within 30 months of a triplet or quadruplet drug regimen have poorer outcomes than those who progress after 30 months.
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2025-12-07 08:00:20
2025-12-07 22:21:35
Using Conventional Definitions, Some High-Risk Multiple Myeloma Patients May Be Missed
December 7, 2025
New research showcases a first-of-its-kind artificial intelligence algorithm to examine the dynamics underlying chronic kidney disease in individuals living with sickle cell disease. The algorithm employed data from the ASH Research Collaborative (ASH RC) Data Hub.
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2025-12-07 08:00:16
2025-12-07 02:40:11
Artificial Intelligence Accurately Predicts Chronic Kidney Disease in Individuals with Sickle Cell Disease
December 7, 2025
The ASH Research Collaborative (ASH RC) conducted research among individuals involved in its national and local sickle cell disease community advisory boards (CABs) to assess clinical trial literacy, and found that even among engaged advocates, there were knowledge gaps about clinical trials.
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2025-12-07 08:00:12
2025-12-07 02:39:48
Clinical Trial Literacy Gaps Exist Among Lived Experience Experts
December 6, 2025
The American Society of Hematology (ASH) has expanded its awards and mentorship programs to address the threats to funding for hematology research and to protect the pipeline of new hematologists entering the field. In these extraordinary times, the ASH RC is uniquely positioned to advance ASH’s Multifaceted Approach to Research and Regulatory Challenges in Hematology (MARRCH) initiative by expanding and diversifying its Multiple Myeloma (MM) Research Network.
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2025-12-06 13:00:57
2025-12-07 02:07:21
ASH Research Collaborative Multiple Myeloma Data Hub Award
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@ASHCOLLAB
ASH Research Collaborative
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Non-profit organization established by @ASH_Hematology to improve the lives of people affected by blood diseases and accelerate progress in #hematology.
ASH Research Collaborative
@ashcollab
14 Apr
New in Blood Advances: the ASH Research Collaborative SCD Research Network is accelerating sickle cell disease research through real-world data and community partnerships. Read now: https://ow.ly/4b1Q50YJ2Py
#SCD #Research @Bloodjournal
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ASH Research Collaborative
@ashcollab
3 Apr
Exciting leadership update from the ASH Research Collaborative (ASH RC)!
The ASH RC Board of Directors welcomes three new directors: Margaret Anderson, MA; Adama Ibrahim, EMBA; and DB Kartik, MBA, CFA. Learn more: https://ow.ly/pZRf50YCV9J
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ASH Research Collaborative
@ashcollab
22 Dec
From idea to results: what exactly happens during a clinical study?
Our new ASH RC video, shaped by NCAB member input, describes each stage of the clinical trial lifecycle in clear, accessible language.
#SickleCell #ClinicalResearch #ConquerSCD
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ASH RESEARCH COLLABORATIVE
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the
American Society of Hematology
(ASH) in 2017 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology.
Learn more about ASH RC
LINKS & RESOURCES
American Society of Hematology
Conflict of Interest Policy
Taxpayer ID Number & Certification Form (W-9)
CONTACT INFORMATION
Mailing Address
ASH Research Collaborative
2021 L Street NW, Suite 900
Washington, DC 20036
Toll Free Phone
+1 (866) 828.1231
E-mail
info@ashrc.org
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