The Multiple Myeloma Research Foundation has launched two open access resources that will support cancer research and drug development by facilitating data access and sharing between researchers and patients.
Both resources, which were announced today during an MMRF conference held in New York City, were developed in collaboration with GenoSpace, a Cambridge, Mass.-based bioinformatics company that provides cloud-based infrastructure to link clinical and genomic data (BI 6/29/2012).
The partners began working together last year to build a public database for researchers and patients involved in the Relating Clinical Outcomes in Multiple Myeloma to Personal Assessment of Genetic Profile, or CoMMpass, study — an MMRF research project that launched in 2011 to follow about 1,000 patients from initial diagnosis through treatment over a minimum of five years. This past summer, John Quackenbush, GenoSpace's founder and CEO, and Kathy Guisti, MMRF's founder and CEO, were both recognized for this work by the White House's Office of Science and Technology Policy as part of the Open Science Champion of Change program (BI 6/21/2013).
The first of the resources developed as part of the collaboration, the MMRF Researcher Gateway, gives multiple myeloma researchers access to genomic and clinical data from patients enrolled in CoMMpass.
It provides information such as genetic mutations, age, gender, race, response to different therapies, test results, and more, GenoSpace's Quackenbush explained during a demonstration of the portal at the conference. His presentation highlighted capabilities that let researchers do things like cluster and compare patients based on specific characteristics such as BRAF or KRAS mutations and response to therapies. They can also use the system, Quackenbush said, to explore new mutations that could serve as drug targets.
The second resource called the MMRF CoMMunity Gateway is a portal for patients to share information and connect with each other, be informed about clinical trials that they may be eligible for based on characteristics such as specific mutations, find patient support centers, and so on. Patients who choose to participate in the CoMMunity Gateway, Quackenbush said, have control over their personal data and make their own decisions about how much information to share with other users and researchers. Less than 24 hours after the Gateway launched, more than 650 patients had signed up, according to the MMRF.
MMRF believes that making it easier for both researchers and patients to share information with each other should help speed up the development of more targeted treatments and cures for multiple myeloma.
During panels held at the MMRF event, several speakers highlighted difficulty accessing data and obtaining it in sufficient quantities as significant stumbling blocks to multiple myeloma research. Research into the cancer has so far revealed at least 50 mutations that play a role in its development, according to the panelists, but understanding how these mutations work and designing effective treatment regimens requires analyzing data from much larger patient cohorts than are currently available.
There are also difficulties getting patients to participate in clinical trials. According to one statistic from MMRF's Guisti, 20 percent of multiple myeloma drug trials never enroll a single patient, while about 30 percent enroll only one patient. Finally, several speakers noted that many studies only provide "snapshots in time" of patients' conditions even though what's actually needed are data that span much longer stretches of the disease's cycle in order to better understand and treat it, they said.
These are issues that MMRF is trying to address through CoMMpass and with the launch of the Gateway infrastructure.
“Millions of dollars are spent yearly on cancer research, yet there is no viable means of sharing the data – and it is slowing down progress towards finding cures,” Walter Capone, MMRF's chief operating officer, said in a statement. “The MMRF Gateways will inject speed into the system by breaking down barriers, and encourage information sharing at the highest levels.”