Multiple Myeloma Research Foundation Launches Patient Registry

Prior to the creation of the Multiple Myeloma Research Foundation (MMRF), patients with a multiple myeloma diagnosis were given a pretty short prognosis. MMRF, founded in 1998, was created out of a need for research, new therapies and quicker solutions for patients.

“As a patient, and someone who had worked in the pharmaceutical industry, I could see the challenges in the health care system, and I could also see ways to solve them,” founder and 24-year multiple myeloma survivor Kathy Giusti said.¹ MMRF quickly formed collaborative groups, built tissue banks for medical education and developed relationships with academic hospitals to get the ball rolling.

Patient Navigators Help Guide the Process

MMRF has several oncology nurses that serve as patient navigators. They help patients get the right tests and make sure they understand the results of those tests so they can make the best treatment decisions for themselves.

Anne Quinn Young, Chief Marketing and Development Officer at MMRF, said that patients who work with the organization’s patient navigators have better experiences than those who go it alone. They also know to do things like seek a second opinion, something they may not have done without guidance.

Right Track is what they call their patient navigation program, with the goal of helping patients get the right team, the right tests and the right treatment. Together, with four other cancer organizations connected through the Kraft Precision Medicine Accelerator at Harvard Business School, MMRF launched the Right Track to help patients make treatment decisions and improve their own outcomes.²

“Patients are at the center of everything. Researchers rely on their data—genomic, immune, clinical, and experiential—to understand what drives disease. This, in turn, enables drug developers to create more effective therapies and gets patients into the right clinical trials,” according to Harvard Business School.³

Sharing Data

Scaling this operation has been at the forefront of MMRF’s goals, and Anne is excited that the organization is launching CureCloud this summer, a direct-to-patient registry that will enable patients to play a role in the delivery of precision medicine in a safe and secure method.

“The data, of course, is anonymized,” Anne said. “And we think patients will be excited to participate.”

Approximately 93 percent of patients are willing to share their data.⁴MMRF CureCloud is a comprehensive data repository that will aggregate and visualize many types of data.

Although COVID-19 has taken over the hearts and minds of many of us globally, Anne wants to remind patients with multiple myeloma, “We have a mission to cure this disease. We want you to know we’re still at it.”

Advice to Newly Diagnosed Patients

• Start with the best team, either a National Cancer Institute (NCI)-designated medical group or one that sees a high volume of patients with multiple myeloma.

• Get the right tests whether that means diagnostics, scans or genetic sequencing.

• Ask your oncologist if the standard of care is right you, or if you should participate in a clinical trial. Seek a second opinion if needed.

• Share your data to help other patients down the road.

Patients with multiple myeloma continue to thrive, thanks to the work of MMRF and the business leaders and research scientists who are bringing new therapies to market and continue to conduct clinical trials to learn more.

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