A Key Data Sharing Partnership: The Multiple Myeloma Research Foundation Donates Data to the GDC
, by Louis M. Staudt M.D., Ph.D. and Amy E. Blum, M.A.
Years before President Obama launched the Precision Medicine Initiative®, the Multiple Myeloma Research Foundation (MMRF), a non-profit patient advocacy organization, initiated a bold research study to improve outcomes of patients with multiple myeloma. Today, the MMRF announced that it will share its data through a first of its kind partnership with the NCI Genomic Data Commons (GDC).
A CoMMpass for Multiple Myeloma
When the MMRF was founded in 1998, only 28% of multiple myeloma patients lived for five years after diagnosis. That number has now almost doubled to 45% with the advent of several chemotherapies that can extend the lives of patients. But not all multiple myelomas are alike. They are driven by a number of different genomic events that determine the effectiveness of different therapies.
The MMRF realized early on that genomic technology could provide important clinical insights. Building off the Multiple Myeloma Genomics Initiative that sequenced the genomes of 200 patients, the organization saw the need to follow patients throughout the course of their journey with multiple myeloma in order to understand the relationship between patients’ genomics and their treatment results. The MMRF CoMMpass Study began collecting clinical and genetic information from multiple myeloma patients in 2011, and now has data from over 1,000 patients, including initial genetic data and additional tests that will continue to be added as the patients undergo and respond to therapies.
Toward Precision Oncology
Initial analyses of the CoMMpass data have identified many genomic alterations that were not previously found in multiple myeloma, including gene abnormalities primarily found in African Americans, who are twice as likely to develop multiple myeloma compared to European Americans. To translate insights from CoMMpass to the patient care, MMRF’s clinical collaborators have begun testing new therapies for multiple myeloma in several Phase I and Phase II clinical trials.
Leading the Way With Data Sharing
The MMRF has proven itself a leader in scientific innovation. I am now thrilled to add that the MMRF has emerged as a leader in data sharing, as they will donate their data to the GDC with the goal of improving the lives of their patients and cancer patients worldwide.
As I wrote in the New England Journal of Medicine, the GDC facilitates discoveries in precision oncology by accepting and harmonizing disparate datasets on cancer, and making the data widely accessible. I am thrilled that MMRF will be contributing the data from their CoMMpass study and Genomics Initiative to the GDC, adding more up to a petabyte (approximately 223,000 DVDs) of data.
MMRF’s donation supports CCG’s view that by making “big data” on cancer easy to find, access, and analyze, the research community can identify rare genetic variants and driver events in rare cancers, leading to advances in cancer care. We hope you will join us in this effort.