Jay Tenenbaum Urges Collaboration To Treat the Long Tail of Disease

By Kevin Davies

February 26, 2009 | SAN FRANCISCO—In the powerful opening keynote at CHI’s Molecular Medicine Tri-Conference on Wednesday, Jay “Marty” Tenenbaum, founder and chairman of CollabRx, urged members of the life sciences community to share their resources to empower personalized research and help satisfy the unmet medical needs of the “long tail” of disease. “As a patient… I want to tap all of the world’s knowledge and all of the world’s resources into curing my disease,” Tenenbaum said.

Tenenbaum, a highly successful Internet entrepreneur in the 1990s, is a cancer survivor. Ten years ago, suffering from metastatic melanoma, he was given 12 months to live. He researched various experimental drug treatments, and credits a failed cancer vaccine, among other drugs, for saving his life. Through the company he founded, CollabRx, Tenenbaum aims to leverage the extraordinary untapped expertise and resources across the industry to empower individual patient healthcare through personalized research.

“I was there in the very early days of e-commerce…. The vision is absolutely clear…. For those of you who get it, there is the potential to become the Microsoft’s, the Google’s, the Ebay’s, the Amazon’s of this industry… for those of you who don’t get with it, unfortunately you’re going to wind up like  Waldenbooks or Egghead Software or Encyclopedia Britannica.”

Tenenbaum argued that individual patients, particularly in severe diseases such as cancer, cannot wait for typical drug trials that typically take 15 years and cost more than $1 billion. That process can be cut from years to months by slashing everything about clinical trials and replacing group statistics with deep, genomic profiling of the tumor, including whole-genome sequencing. “We get a very detailed picture of the biology and the pathways driving this person’s disease.”

Moreover, rather than spend years identifying new drugs, CollabRx research focuses on the thousands of drugs that have already passed FDA approval, which are generally safe. Computational biology tools can then map those existing drugs, used off label or in cocktails, to find combinations to help individual patients.

“I’m pleased to say [that] we’ve been able to be successful to find therapies in large numbers of patients we’ve looked at,” said Tenenbaum, who called it “a new gold standard from the perspective of the patient, in which every patient gets the benefit of the best available science.” Furthermore, aggregating those results will help drive research, he said.

CollabRx ONE
“Today, I’m announcing the launch of a new personalized research service for oncology,” said Tenenbaum—CollabRx ONE. The patient will instruct the hospital to send biopsy samples to CLIA-approved labs (specified by CollabRx), which will produce detailed genomic analyses of the tumor. Those data will be analyzed by computational and systems biologists and interpreted for the benefit of the patient’s oncologists who may not be versed in molecular genetics.

“Within weeks to a month of starting this process, we can get a drug into a patient. And we can learn within weeks to a month after that, based on either biomarkers or imaging, whether or not that patient is responding to therapy. This is really unbelievable.” Tenenbaum called it “real-time research – there’s no daylight between research and the patient.”

Tenenbaum says he’s supported several virtual biotechs, including one for the Melanoma Research Alliance, which is helping to classify the subtypes of melanomas. Cancer centers have built up excellent repositories of cancer samples, but “unfortunately, they are all sitting in freezers.” These are now being distributed to centers including the Broad Institute and TGEN for profiling. From there, oncologists are setting up virtual trials networks on highly targeted sub-populations of patients.

“We’re trying to put these two ideas together—the virtual biotech and the personalized research service, in order to team with institutions in order to validate this process on 50 to 100 patients…. a process trial, not a drug trial.” It’s continuous process improvement, similar to the strategy at a company like Toyota.

The melanoma research alliance is being connected with other groups doing melanoma research to form a bigger network. “If you’re a company or a researcher or an oncologist or a patient even who is involved or concerned with melanoma, you’ve got to be connected to a network like this.”

“I can’t do anything without you guys,” said Tenenbaum. “I need specimens, I need drugs, I need access to screening libraries, mouse models, and laboratory facilities.” A number of organizations started Health Commons, including Science Commons, the Public Library of Science, and Tenenbaum’s Commerce Net. Organizations put their resources into the commons first, and negotiations (if necessary) over intellectual property sharing can occur later.

New collaborators include the Personal Genome Project, the non-profit Treat 1000, which aims to take deep sequencing data from 1000 tumors, and a new entity called SAGE, being created by Steven Friend and Eric Schadt of Merck. “Their mission,” said Tenenbaum, “is to create an open-access site where the science community can collaborate by integrating all of the fragmented genomic data sets and building integrated bionetwork models of human disease to use those models to eradicate those disease.“ Tenenbaum said Merck would be making seed contributions of relevant data sets and models.

Tenenbaum urged the audience to consider of the unused assets sitting on shelves that are not being monetized, but yet “might be the key to saving someone’s life.” A personalized research service can provide answers to patients within weeks to months, he concluded. “This is the way patients with serious diseases are going to be treated… We’re doing it today, and it’s only going to get better.”

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