Ultimately aiming to advance precision medicine, the Multiple Myeloma Research Foundation (MMRF) has officially launched its Direct-to-Patient (DTP) Registry, allowing people with multiple myeloma to securely submit their health data to MMRF CureCloud, the foundation’s data repository.
This is the first data repository to gather people’s longitudinal clinical, genetic — and eventually immune profiling — information, with the ultimate goal to accelerate the development and implementation of precision medicine for this patient population.
According to the foundation, approximately 93% of people with multiple myeloma are willing to share their health data to promote treatment advancements. However, most of them have not done so before now due to the lack of an easily accessible platform. The MMRF created the DTP Registry to fill in this gap.
“Patients understand that there is an urgent need for more people to donate their data,” Kathy Giusti, MMRF’s founder and chief mission officer, and herself a multiple myeloma patient, said in a press release.
“This understanding led me to be among the first patients to share my data, and the hope is that, through this revolutionary initiative, we continue to break down barriers that make data sharing difficult and use this information to find more precise treatments that allow people to live longer and healthier lives,” Giusti added.
After completing an online consent form and e-signing a medical waiver, patients will be able to use the DTP Registry to safely share their electronic health records (EHRs) with the foundation.
In addition, participants will have the opportunity to send their blood samples to a specialized laboratory for DNA analysis. The results would be stored within the MMRF Tissue Bank for future immune profiling. To do so, participants only have to schedule an appointment with a phlebotomist — a healthcare professional trained to draw blood from a patient — at a time and place of their choosing.
Once EHRs and blood samples are analyzed, all information will be stripped of identifiers and uploaded to the recently launched CureCloud data repository.
The database will be accessible to the whole multiple myeloma community, including clinicians, researchers and patients. Researchers may use CureCloud to look for new therapeutic targets to treat the disease, while physicians and patients may use the stored information to make well-informed clinical decisions.
The repository also will contain information from other studies led by the foundation. These include CoMMpass (NCT01454297), the largest longitudinal genomic study performed in people with multiple myeloma. Recent results from CoMMpass showed that a specific genetic alteration involving the IgL gene predicts resistance to immunomodulatory agents, and poor outcomes in patients with multiple myeloma.
“Data is our strongest weapon against cancer and disease, which is why such a large-scale data collection and aggregation effort is necessary to inform critical treatment decisions as it helps make medicine more personalized and precise,” said Steve Labkoff, MD, chief data officer at the MMRF.
“We are thankful to our amazing partners, donors and the 79 patients who participated in the pilot program thus far, who have enabled us to launch this effort which will undoubtedly accelerate our ability to find a cure for every patient,” Labkoff added.
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