Case Studies2019-10-04T19:47:26+00:00

Case Studies

In this case study, discover how Prometheus proposed using its agile data platform, RexRegistry, to deliver a Data Hub with the following properties:

(1) Facilitate the immediate demand for an SCN2A natural history study

(2) be extensible to support additional SCN2A clinical studies at reduced marginal costs; and

(3) enable data integration and reuse across all studies and potential partners (as allowed by data use agreements and law)

(4) and adhere to all patient privacy and protection laws governed by Institutional Review Boards (IRBs) and ethics committees.

Length: 11 minutes

Read Case Study

The foundation of the ASH RC is its agile data repository, the Data Hub. This technology platform, developed by our informatics partner Prometheus Research, facilitates

the exchange and repurposing of health information by aggregating and making available for inquiry complex real-world data on hematologic diseases.

For hematologic diseases, particularly for rare diseases, it is difficult to bring together a critical mass of data, as the patient populations are small and their information is stored in locations around the world. Questions about the populations, the natural history of disease at the individual patient level, practice patterns, and the quality of care are often left unanswered.

Recognizing that this limitation inhibits the pace of discovery, ASH invested in the creation of the ASH RC Data Hub to facilitate the sharing of data on hematologic conditions in support of scientific inquiry. ASH is uniquely positioned as a trusted convener to collaborate with different stakeholders to grow the data in the Data Hub and provide access to researchers and clinicians working to conquer blood diseases.

Get the Info Sheet