The Multiple Myeloma Research Foundation (MMRF) announced today that it
is launching the MMRF CureCloud™, a centralized data hub that generates,
aggregates and visualizes data to accelerate the delivery of precision
medicine to multiple myeloma patients. The CureCloud is a critical part
of the organization’s bold three-year plan, which is to transform
patient care through addressing the medical industry’s biggest
challenge: data sharing and collection.
The MMRF is working with Broad Genomics, Broad Data Science Platform,
COTA, Inc., Tempus, EMSI Health, Prometheus Research, LLC, and PierianDx
to address a fundamental, and complex, challenge in healthcare that is
often overlooked—the need for shared, comprehensive data to identify
targets and inform data-driven treatment decisions for multiple myeloma
patients. Given that multiple myeloma is a highly heterogenous disease,
substantial amounts of genomic, immune and clinical data needs to be
curated and shared across physicians, researchers and patients to drive
more effective treatments.
“One of the biggest problems that exists within today’s healthcare
system is lack of access to significant quantities of high-quality
longitudinal patient data. As a patient-founded and focused
organization, we are committed to making the changes needed to transform
the healthcare system and find ways to empower patients so that they can
make informed decisions about their care,” says Kathy Giusti, Co-Founder
and Chief Mission Officer of the MMRF. “One of the first steps in
achieving this goal is to take on the near impossible task of bringing
together genomic data, immune data, and electronic health records across
a wide variety of patients to create CureCloud.”
The CureCloud model will include the MMRF’s landmark CoMMpassSM
study, the largest genomic dataset in any cancer, which identified 12
unique sub-types within myeloma, as well as other MMRF legacy assets and
external data sources. Patient data will be de-identified and securely
stored.
The MMRF will provide access to this data to every stakeholder in the
multiple myeloma ecosystem. A suite of analytics and visualization tools
will enable patients and their doctors to compare clinical and genomic
data with patients in the CureCloud to help inform treatment decisions,
and researchers to identify new targets and generate hypotheses.
“Creating this standards-based, fully-linked, unified data hub that
drives data to knowledge, knowledge to insights, and insights to value,
will be answering the most critical clinical questions while supporting
the identification of new targets and care pathways. This is an
exceptionally complex and demanding goal,” says Steve Labkoff, MD, FACP,
FACMIA, Chief Data Officer of the MMRF. “It is thanks to the willingness
of our partners and the MMRF’s legacy data assets that we are able to
collect and aggregate massive amounts of research and clinical data,
building one of the most comprehensive and complex systems I have ever
seen.”
Later this fall, the MMRF will launch a patient registry in which
patients will be invited to contribute their clinical and genomic, and
eventually immune data, to the CureCloud which will provide further
insights and help inform data-driven decisions. This research initiative
is currently being piloted with a limited number of patients.
About Multiple Myeloma
Multiple myeloma (MM) is a cancer of the plasma cell. It is the second
most common blood cancer. An estimated 30,770 adults (16,400 men and
14,730 women) in the United States will be diagnosed with MM in 2019 and
an estimated 12,770 people are predicted to die from the disease. The
five-year survival rate for MM is approximately 47%, versus 31% in 1999.
About the Multiple Myeloma Research Foundation (MMRF)
A pioneer in precision medicine, the Multiple Myeloma Research
Foundation (MMRF) seeks to find a cure for all multiple myeloma patients
by relentlessly pursuing innovations that accelerate the development of
precision treatments for cancer. Founded in 1998 by Kathy Giusti, a
multiple myeloma patient, and her twin sister Karen Andrews as a
501(c)(3) nonprofit organization, the MMRF has created the business
model around cancer—from data to analytics to the clinic. The MMRF
identifies barriers and then finds the solutions to overcome them,
bringing in the best partners and aligning incentives in the industry to
drive better outcomes for patients. Since its inception, the
organization has collected thousands of samples and tissues, opened
nearly 100 trials, helped bring 10 FDA-approved therapies to market, and
built CoMMpass, the single largest genomic dataset for any cancer.
Today, the MMRF is building on its legacy in genomics and is expanding
into immune-oncology, as the combination of these two fields will be
critical to making precision medicine possible for all patients. The
MMRF has raised nearly $500 million and directs nearly 90% of the total
funds to research and related programs. To learn more, visit www.themmrf.org.
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