Novartis and Amgen have submitted datasets to the ASH Research Collaborative (ASH RC) Data Hub designed to accelerate scientific discovery by collecting clinical data on rare blood diseases.

According to the American Society of Haematology, the pharmaceutical companies are the first to provide industry datasets.

As part of a data-sharing initiative, the ASH RC has collaborated with Novartis and Amgen to include de-identified patient data from three separate studies of around 500 patients living with Sickle Cell Disease (SCD) and nearly 1,000 patients identified with multiple myeloma.

The data-sharing platform now includes patient data of SCD and multiple myeloma.

American Society of Hematology and ASH RC president Dr Roy Silverstein said: “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 de-identified data for 498 people to the ASH RC from its three-year, prospective, non-interventional, multicenter registry in SCD (FISCO).

De-identified data for 743 people was submitted by Amgen from its Phase III trial (ENDEAVOR) with carfilzomib and dexamethasone versus bortezomib and dexamethasone for relapsed multiple myeloma patients.

The company also provided de-identified data for 634 people from its Phase III study (ASPIRE), which compares carfilzomib, lenalidomide, and dexamethasone (CRd) versus lenalidomide and dexamethasone (Rd).

Amgen global medical senior vice-president and chief medical officer Darryl Sleep said: “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 is engaged in collecting patient data from multiple sources and making it available for query by institutions and investigators, especially in multiple myeloma and SCD.

Since its launch, the hub has captured data from around 3,000 patients with SCD and 2,000 patients with myeloma.

It also launched an ‘SCD Clinical Trials Network’, which uses the hub as the central data repository for trial sites.