By Allison Proffitt
December 24, 2013 | When Kathy Giusti was diagnosed with multiple myeloma in 1996, she was offered drugs that had been used in 1956. She found it unacceptable, so she started the Multiple Myeloma Research Foundation (MMRF) to accelerate cures for the rare disease. The Foundation (of which Kathy, now in remission, serves as head) is now launching a pair of gateways, built by John Quackenbush’s GenoSpace, to link research, researchers and patients that they believe could serve as a model for research for other diseases.
MMRF’s vision has always been to get many stakeholders involved to accelerate multiple myeloma research: researchers, drug companies, hospitals, patients and more, said Walter Capone, MMRF’s Chief Operating Officer. From 1998 to 2004, Giusti and the MMRF built the Multiple Myeloma Research Consortium consisting of 18 academic centers, a multiple myeloma tissue bank, 47 different trials, and 26 different drugs. Six of those drugs have been approved.
With a stocked tissue bank, MMRF launched a $15 million genomics mapping initiative. In 2011, the Foundation published the characterization of multiple myeloma—at least ten subtypes of cancer involving 50 primary mutations and up to 400 secondary mutations—and published the data at myelomagenomics.org.
“It was very clear that only by driving forward an initiative focused on personalized medicine, specifically to identify targets and drive drugs forward for those targets in myeloma, would we really be able to make the next significant advancement in trying to find a cure for the disease,” Capone said.
Now, in what Capone calls the “outgrowth of almost a decade of research,” MMRF has launched two gateways—one for researchers and one for patients—giving access to MMRF’s CoMMpass Study: the clinical information from multiple myeloma patients collected over ten years.
Read the whole story at Clinical Informatics News.