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Collaboration and the Long Tail of Disease

By Kevin Davies

March 24, 2009 | First Base | Ten years ago, Jay “Marty” Tenenbaum, a highly successful Internet entrepreneur, was diagnosed with metastatic melanoma and 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 health care through personalized research.

In a powerful opening keynote at CHI’s Molecular Medicine Tri-Conference (MMTC) in San Francisco in February, 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, his voice ringing with commitment. “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, such as those suffering severe forms of cancer, cannot wait for typical drug trials that take 15 years and cost more than $1 billion. But that time can be cut from years to months by slashing clinical trials, replacing group statistics with deep, genomic profiling of the tumor, including whole-genome sequencing, to produce “a very detailed picture of the biology and the pathways driving this person’s disease.”

Moreover, rather than spend years identifying new drug molecules, CollabRx research focuses on the thousands of drugs that have already passed FDA approval. Computational tools can then map those existing drugs, used off label or in cocktails, to find combinations to help individual patients. The success of CollabRx in finding therapies for many patients represented “a new gold standard... in which every patient gets the benefit of the best available science.”

CollabRx ONE

Tenenbaum announced the launch of a new personalized research service for oncology called CollabR­x ONE. Patients can instruct hospitals to send biopsy samples to CLIA-approved labs specified by CollabRx, for 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 supports several virtual biotechs including one for the Melanoma Research Alliance, which is helping to classify the subtypes of melanoma. Cancer samples are being distributed to the Broad Institute and TGEN for profiling. From there, oncologists are setting up virtual trials networks on targeted sub-populations of patients. The goal is to marry the virtual biotech and the personalized research service, in order to validate the process on 50 to 100 patients.

“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,” Tenenbaum says.

But to succeed, Tenebaum needs help. “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. New collaborators include the Personal Genome Project, Treat 1000, and a brand new entity called Sage, created by Steven Friend and Eric Schadt of Merck (another big MMTC announcement—see p. 9).

Tenenbaum wants researchers and industry executives to consider 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.”

This article also appeared in the March-April 2009 issue of Bio-IT World Magazine.
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