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First Industry Datasets Submitted to ASH Research Collaborative Data Hub

Data-sharing platform now includes data on nearly 500 people living with sickle cell disease and more than 1,000 people with multiple myeloma

(WASHINGTON, DC, Dec. 4, 2019) — The ASH Research Collaborative (ASH RC) has collaborated with two industry leaders, Novartis Pharmaceuticals Corporation (Novartis) and Amgen, to include de-identified patient data from three separate studies of nearly 500 patients living with Sickle Cell Disease (SCD) and more than 1,000 patients with multiple myeloma as part of an unprecedented data sharing initiative.

Novartis and Amgen are the first two pharmaceutical companies to provide datasets to the growing collection of data in the ASH RC Data Hub, a platform designed to accelerate scientific discovery by gathering clinical data on rare blood diseases.

Clinical trials are essential to identify new approaches to the prevention and treatment of hematologic diseases. People who take part in clinical trials do so with the understanding that the experience will add to the growing body of knowledge about health and disease, and thus may help others in the future. Until recently, data from clinical trials have not been made widely available or readily shared between industry, academia, and researchers. This often creates duplication of efforts and missed opportunities to glean insights into hematologic diseases by combining data from multiple clinical trials.

“The inclusion of the Novartis and Amgen data into the ASH RC Data Hub is incredibly exciting as it represents a new paradigm in how we can leverage disparate data sources to answer important clinical questions in a way that wasn’t possible before,” said Dr. Roy Silverstein, MD, of Medical College of Wisconsin, who serves as president of the ASH RC as well as president of the American Society of Hematology. “The data represent a key milestone for the ASH RC to harness the power of Big Data to aggregate and share data from people around the world all in one place. The ASH RC Data Hub will bridge the gap between academia and industry to accelerate the drug development pipeline and improve the treatment landscape for patients and families living with devastating blood diseases.”

Novartis provided the ASH Research Collaborative with de-identified data for 498 people from their 3-year, prospective, non-interventional, multicenter registry in SCD (FISCO).  

Amgen provided de-identified data for 743 people from their phase III study with carfilzomib and dexamethasone versus bortezomib and dexamethasone for relapsed multiple myeloma patients (ENDEAVOR) and 634 people from their phase III study comparing carfilzomib, lenalidomide, and dexamethasone (CRd) vs lenalidomide and dexamethasone (Rd) in patients with relapsed multiple myeloma (ASPIRE).

“We are proud to contribute to this exciting endeavor from the ASH Research Collaborative,” said Darryl Sleep, M.D., Amgen’s senior vice president, global medical, and chief medical officer. “Through partnerships like these we are working together to improve the lives of patients by collectively sharing critical information in multiple myeloma research.”

The ASH RC Data Hub pools patient data from multiple sources and makes it available for query by institutions and investigators. Initially, the ASH RC Data Hub is focusing on multiple myeloma and SCD – as representative of two major domains in hematology, blood cancer and non-malignant blood disorders.

Since launching in 2018, the ASH RC Data Hub has captured data from more than 3,000 patients with SCD and 2,000 patients with myeloma. The ASH RC has also launched an SCD Clinical Trials Network that will use the Data Hub as the central data repository for trial sites. The ASH RC anticipates clinical trial data submissions to become an industry standard and is working closely with pharmaceutical companies and other data sources.

About the ASH Research Collaborative

The ASH Research Collaborative (ASH RC) is a non-profit organization that was established by the American Society of Hematology (ASH) in 2018 to foster collaborative partnerships to accelerate progress in hematology, with the goal of improving the lives of people affected by blood diseases.

The foundation of the ASH RC is its Data Hub, a technology platform that facilitates the exchange of information by aggregating in one place, and making available for inquiry, research-grade data on hematologic diseases. The first research initiative of the ASH RC is a Sickle Cell Disease (SCD) Clinical Trials Network (CTN), which launched in 2019 with the goal of optimizing the conduct of clinical trials research in SCD. The Network will leverage the Data Hub to collect key information and identify gaps that will help advance SCD research and treatment.

Andrea Fischer, American Society of Hematology
[email protected], 202-823-4884