Patients with Multiple Myeloma Who Join MMRF's CureCloud May Improve Their Treatment Options While Contributing to Research
The Multiple Myeloma Research Foundation’s newly launched CureCloud is a registry designed to collect clinical and genomic information about patients. Its goals are to help researchers discover treatments for various subtypes of the disease and let patients know whether they have any of 70 genetic aberrations associated with myeloma.
BY Beth Fand Incollingo
PUBLISHED July 14, 2020
Patients with multiple myeloma now have the opportunity to contribute their health information to a database that will help doctors provide them with optimal care while aiding researchers in developing new treatments.
At a July 14 virtual event featuring singer CeeLo Green, the nonprofit Multiple Myeloma Research Foundation (MMRF) introduced a patient registry called CureCloud. The database will fill gaps in understanding that exist because no single treatment center sees enough patients with myeloma to provide all the information researchers need to develop therapies for various subtypes of the condition.
The aim of the initiative — and of the MMRF — is to save lives and work toward finding a cure, said the event’s hosts, Anne Quinn Young, the organization’s chief marketing and development officer, and ESPN football analyst Rodney Gilmore, a member of the MMRF’s board of directors and a patient with multiple myeloma.
Green, a three-time Grammy Award winner and a 10-time Grammy nominee, joined the program live from his home in Atlanta to sing “Lead Me,” a song from his new album, “It Doesn’t Matter Where We Started.”
“I’m thrilled to be part of the MMRF CureCloud launch today,” he said. “Four years ago, I had the pleasure of performing for so many wonderful patients with myeloma at the MMRF gala, and then I joined the honorary board to support its mission, and that is to find a cure for each and every patient. Now, with CureCloud, there’s a way we can do it all together. With patients enrolling, we can help each other.”
Any patient who has received a diagnosis of multiple myeloma is eligible to join the registry, which is available in most U.S. states.
After answering some questions and giving consent, those who join will receive a blood-draw kit and a visit from a phlebotomist who will draw the blood and mail it to MMRF’s labs for analysis, according to an animated film shown during the registry’s launch.
Some of the blood will be sent to a genomics institute for DNA sequencing that will search for any of 70 specific gene mutations or alterations associated with myeloma. Another portion of the blood will be sent to MMRF’s tissue bank at the Mayo Clinic and stored for eventual immune analysis.
Each patient’s medical records will be analyzed, as well, with attention given to treatments received and response to those therapies. The records will be shared via electronic health record, making the process simple and easy for patients.
After all that has been completed, the information will be uploaded to the CureCloud database — without any personally identifiable information, in order to protect privacy, according to the film.
Researchers from around the world will be able to use the information to draw insights and solutions that help push research forward.
Meanwhile, patients and their doctors will receive genomic sequencing results that can help guide treatment, along with a list of clinical trials that might represent good treatment opportunities.
Furthermore, successfully collecting information and conducting analysis in this way could lead to the use of liquid (blood-based) biopsies to replace more invasive bone marrow biopsies, which would represent “a tremendous, tremendous win” for the myeloma community, Young said.
“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, a vice president with Janssen, which collaborates with the MMRF on drug development programs. The launch of the CureCloud builds on the success of a pilot program that included 200 patients, Young said.
In addition to those with active disease, people who are in remission, including those receiving maintenance therapy, are encouraged to join the registry, but their health records and blood samples will not be requested or included in research unless their disease relapses, MMRF said in a press release. Those with smoldering disease or MGUS are not yet eligible to participate.
Those who join the registry will have access to a CureCloud Facebook page that will connect interested participants with each other, as well as resources and online tools, the press release stated.
Also speaking at the event were ESPN anchor Sage Steele and her father, Gary Richard Steele, the first Black man to play varsity football at West Point, an Army veteran and a patient with multiple myeloma. Newscaster Tom Brokaw, also a patient, was one of the speakers featured in the short film, and joining the event live were Dr. Irene Ghobrial, director of the clinical investigator research program at Dana-Farber Cancer Center in Boston, and Dr. A. Marc Harrison, president and CEO of Intermountain Healthcare. At the end of the event, Dr. Hearn Jay Cho, chief medical officer of the MMRF, and Michael Andreini, chief operating officer, answered questions from attendees.
In addition to the CureCloud, the MMRF has completed many other projects over the last 20 years that paved the way for better and more effective treatment. It built the first multiple myeloma tissue bank, sequenced the myeloma genome for the first time and spearheaded 100 clinical trials that helped 12 drugs receive FDA approval for use by patients, tripling their lifespan. The organization continues to share all of its data in the public domain, Founder and Chief Mission Officer Kathy Giusti said in a second short film shown during the event.
To sign up for the CureCloud registry, visit mmrfcurecloud.org.