Jump to Main Content


ASH Multiple Myeloma Research Registry Highlighted as Part of Biden Cancer Summit

(WASHINGTON, September 21, 2018) — In collaboration with the Biden Cancer Initiative, today the American Society of Hematology (ASH) shared an update on its commitment to develop a research-focused data registry on multiple myeloma.

The announcement was made ahead of the Biden Cancer Summit, hosted by former Vice President Joe Biden and Dr. Jill Biden today in Washington, DC. The event is focused on strategies for improving the cancer journey for patients, their families, and caregivers. The Society joins other public and private-sector organizations in committing to initiatives that are intended to double the rate of progress against cancer and improve the patient experience. 

“As the world’s largest professional organization dedicated to the causes and treatments of blood disorders, including blood cancers, ASH has the expertise and convening power to lead the charge toward improving cancer research and care,” said ASH President Alexis A. Thompson, MD, MPH, of the Ann and Robert H. Lurie Children’s Hospital of Chicago. “The ASH research registry addresses the critical need for improved data-sharing among researchers. We expect our infrastructure will serve as a model for basic scientists, clinical researchers, and clinicians all over the world.”

Launched in 2017 with initial pilot programs in multiple myeloma and sickle cell disease, the ASH research registry is intended to accelerate the pace of research, increase the number of new research projects, and decrease costs as well as the time needed for research. The Society has committed to incorporating multiple myeloma data from at least two partners by December and expects that data set acquisition from additional partners will continue throughout 2019. ASH has committed to investing nearly $20 million into the project over the first five years. 

The registry was inspired by the National Cancer Moonshot Initiative, launched by then Vice President Biden in 2016 to increase the number of cancer studies and their impact globally. A major component of this endeavor was the shared data initiative, which promoted pooling genomic and clinical data between researchers to improve our understanding of cancer and our ability to improve patient outcomes.

In designing a process for sharing research and treatment data from domestic and international myeloma research centers, ASH is seeking to create a model that can be used by oncologists to collaborate and share data to make great progress in defeating all kinds of cancers.

“ASH applauds the Biden Cancer Initiative for continuing to promote the important mission of removing barriers to improved cancer care, and we look forward to our continued collaboration,” said Dr. Thompson.

The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 50 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. The official journal of ASH is Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, which is available weekly in print and online. In 2016, ASH launched Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.   
Amanda Szabo, American Society of Hematology 
[email protected]; 202-552-4914