The Multiple Myeloma Research Foundation (MMRF) launched its Direct-to-Patient (DTP) Registry as a way to invite patients with multiple myeloma to securely submit their health data to MMRF CureCloud, the foundations data repository. This represents the fist data repository used to gather patient’s longitudinal clinical, genetic, and, eventually, immune profiling information. The MMRF goal is to accelerate the development and implementation of precision medicine for this target patient population.
Myeloma Research News’ Joana Carvalho reports that about 93% of multiple myeloma patients will share health data to promote cures. But most haven’t shared any material amount of data as of yet because there is no easy to access and use platform. Ms. Carvalho suggests that with the “DTP Registry,” this will now change.
Ms. Kathy Giusti, multiple myeloma patient, founder and chief mission officer of MMRF, suggests that patients understand that their data is required to accelerate the development of cures. Apparently, once the patients complete an online consent form and sign a medical waiver, they can use the DTP registry to safely share their electronic health records with the foundation.
In addition, MMRF will make it easier for patients to send their blood samples to a specialized laboratory for DNA analysis—the results will be stored in the MMRF Tissue Bank for future immune profiling.
Once all data from EHRs, blood samples, and any other sources are collected, analyzed, and stored, they will be stripped of identifiers and uploaded to the recently launched CureCloud data repository. This database is accessible to the multiple myeloma community—from clinicians and investigators to patients. Moreover, research groups can utilize the data to identify new therapeutic targets to treat the disease.
The repository will include data from existing studies sponsored by the foundation, including CoMMpass, the largest longitudinal genomic study performed in people with multiple myeloma. Some results look promising. For instance, CoMMpass revealed that a specific genetic alteration involving the lgL gene predicts resistance to immunomodulatory agents and poor outcomes in patients with multiple myeloma, reported Ms. Carvalho.
Steve Labkoff, MD, chief data officer for MMRF, reports that data will be a key weapon to fight against cancer and disease. Thus far, 79 patients have participated in a MMRF pilot.
Call to Action: For patients that have been diagnosed with multiple myeloma, consider participating with MMRF. We understand that first you should consult with your physician and then consider the possibilities of participating or sharing and connecting with others that either have the same condition or have family members struggling with the disease.