The ASH Research Collaborative (ASH RC) has collaborated with two industry leaders, 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.
The First Two Industry Sponsors
Novartis and Amgen represent the first two industry sponsors to offer the 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.
Essential for identifying new approaches to the prevention and treatment of hematologic diseases, people who take part in clinical research do so with an understanding that the experience will add to the growing body of knowledge about health and disease, and thus may help others in the future. To date clinical trials haven’t been made widely available or readily shared between industry, academia and researchers. Unfortunately this often contributes to duplication of efforts and missed opportunities to glean insights into hematologic diseases by combining data from multiple clinical trials.
Sharing Offers Exciting Potential
With big players such as Novartis and Amgen sharing their data with the ASH RC Data Hub “a new paradigm” in how data can be leveraged now exists, reports Dr. Roy Silverstein, MD, Medical College of Wisconsin, who also serves as president of ASH RC as well as president of the American Society of Hematology.
Moreover, “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 and improve the treatment landscape for patients and families with devastating blood diseases.”
Novartis offered de-identified data from 498 people from their 3-year, prospective, non-interventional, multicenter registry in SCD (FISCO). While Amgen provided de-identified data for 783 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).
Pooling Patient Data
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 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.