Addressing the need for shared, comprehensive data to identify targets and provide personalized treatment road maps, the Multiple Myeloma Research Foundation (MMRF) is launching a centralized data hub called MMRF CureCloud.
Designed to ultimately speed delivery of precision medicine to people with multiple myeloma, CureCloud is a central part of the organization’s long-term plan to substantially improve patient care through better data and data collection. The initiative also will help scientists identify new treatment targets and create hypotheses, the foundation said.
The hub model will include the MMRF’s landmark CoMMpass study — which it bills as the most expansive genomic data set in any cancer — that identified a dozen unique myeloma subtypes. It also will incorporate external data sources and other MMRF resources. For privacy and safety, patient information will be stripped of identifiers and securely stored, the foundation said.
A pioneer in precision medicine, the organization will introduce a patient registry this fall in which participants may contribute data to the CureCloud. As part of the pilot initiative, a limited number of patients are already doing so.
“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,” Kathy Giusti, MMRF chief mission officer, said a press release. “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.”
A major first step, Giusti added, is to bring together electronic health records and genomic and immune data, across a broad mix of patients. The information will be available to the entire multiple myeloma community. An array of analytics and visualization tools will enable patients and their physicians to compare clinical and genomic data with CureCloud participants.
Because multiple myeloma is so varied and diverse, there’s a pressing need for vast amounts of data curation and sharing to drive more treatment development. the foundation said.
“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,” said Steve Labkoff, MD, MMRF chief data officer.
“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,” he added.
Anyone interested may visit this site to get started. After joining, participants will asked for permission for blood samples, via a provided kit, and medical data from physicians and hospitals. That information will be analyzed, de-identified, and shared with researchers.