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Can a Multiple Myeloma Registry Improve Patient Outcomes?

Can a Multiple Myeloma Registry Improve Patient Outcomes?
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Published on July 27, 2020

New Multiple Myeloma Patient Registry Aims to Improve Treatment Outcomes

The Multiple Myeloma Research Foundation (MMRF) has launched a cloud-based patient registry that can be shared with researchers around the world, with the hopes of improving treatment outcomes and eventually finding a cure for the blood cancer.

The CureCloud is open to anyone diagnosed with multiple myeloma, the second most common type of blood cancer behind non-Hodgkin lymphoma. There are more than 30,000 new cases of multiple myeloma each year in the United States, according to the American Society of Clinical Oncology.

The Need for a Myeloma Patient Registry

"Despite incredible advances in the last decade, multiple myeloma remains incurable and data is urgently needed to answer important patient questions and optimize outcomes," MMRF Chief Operating Officer Mike Andreini said in a July 14 press release announcing the launch of CureCloud. The system was based on a pilot program that included 200 participants.

He added: "The CureCloud is unique because it addresses this need by combining the scientific rigor and patient protections of an IRB (Institutional Review Board)-approved study with best practices from direct-to-consumer companies to enhance patient engagement and advance precision medicine."

Can a Multiple Myeloma Registry Improve Patient OutcomesHow Does CureCloud Work?

Besides general information, the database will include genetic information obtained from a blood sample. Each patient will be sent a blood-draw kit and will receive a visit from a phlebotomist who will draw the blood. The sample will be shipped to MMRF’s labs for analysis. A portion of the blood will be shared with a genomics institute for DNA sequencing.

The objective will be to find any of the 70 specific gene mutations or alterations associated with myeloma. Another subsample will be sent to MMRF’s tissue bank at the Mayo Clinic and stored for eventual immune analysis.

The registrant’s medical profile will be analyzed, including responses and reactions to treatments and therapies already received, and entered into an electronic health record. It will then be uploaded to the CureCloud database without identifying information.

Patients and their doctors will be provided with a copy of the genomic sequencing results along with any clinical trials that might represent promising treatment opportunities.

Advancing Myeloma Treatment Options

But the major goal is to give access to the trove of information to academic and commercial researchers worldwide, who — among other things the MMRF hopes — could develop blood-based biopsies to replace the more invasive bone marrow biopsies.

“We see the CureCloud as the best type of project designed for meeting the needs of patients and really helping us take multiple myeloma treatment regimens to the next level,” said Dr. Craig Tendler, the vice president of Belgium-based Janssen Pharmaceutica, as reported by Cure Today. Janssen Pharmaceutica collaborates with the MMRF on drug development programs. 

Besides patients with active cases, those in remission, including someone receiving maintenance therapy, may join the CureCloud registry, but their records and blood samples will not be requested or included in research unless their multiple myeloma relapses, the MMRF said in a release.

Patients with smoldering disease or monoclonal gammopathy of undetermined significance (MGUS), a condition in which an abnormal M protein is present in the blood and can progress to blood cancers, are not eligible to register.

Putting Power in the Hands of Patients

Database registrants will have access to a CureCloud Facebook page that will allow them to connect with one another.

"CureCloud will put power in the hands of patients," said MMRF Founder and Chief Mission Officer Kathy Giusti in the release, "by knocking down barriers, democratizing healthcare, and offering precise information to patients and their doctors about their cancer diagnosis in a way that is simple, affordable and accessible."

Patients who wish to join the CureCloud registry should visit MMRF CureCloud.

To receive more information about multiple myeloma and other blood cancers, sign up for Patient Power e-news.

~Megan Trusdell


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