(SAN DIEGO, Dec. 7, 2024) – The ASH RC Data Hub was established to collect and share real-world data on patients with hematologic disorders, including those diagnosed with multiple myeloma. The Data Hub is a multi-center network of 12 US-based academic medical centers involving clinicians, patients, biostatisticians, informaticians, and data scientists. It aggregates real-world data from more than 20,350 patients, which allows sites to track their patients, analyze outcomes, and identify ways to improve quality of care for people living with multiple myeloma.

Real-world data plays an important role in efficient and timely evidence generation and can improve clinical understanding of disparities in treatment access, treatment toxicities, and how this affects quality of life.

Using the structure of the Network, the ASH Research Collaborative successfully implemented and established the feasibility of collecting data directly from patients electronically to monitor SARS-CoV-2 vaccines and COVID-19 related outcomes in the COVID-19 OutcomeS in Myeloma and the Impact of VaCcines (COSMIC) study.

This research provides a proof-of-concept model for prospective evidence generation for the myeloma community. The Data Hub Multiple Myeloma Program is currently undergoing completion and cleaning procedures, and a network-wide analytic data set will be available for retrospective data analyses in 2025.

Read more about research:

3792e: Development of the ASH Research Collaborative Multiple Myeloma Program: A Multicenter, Real-World Evidence Generation Network

About the ASH Research Collaborative

The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH)  to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate research and improve outcomes for individuals with hematologic diseases by advancing treatment developments and generating evidence to support clinical decisions and care.

Contact

Melissa McGue, American Society of Hematology
mmcgue@hematology.org
202-552-4927