Study relies on collaboration and data sharing

“Data sharing raises my expectations for working smarter and faster without an exponential jump in effort to get there. I see the consortium model—and caBIG®—as a means to ensure that data “diffuses” to my desk. We owe it to ourselves as a community dealing with lethal diseases to come up with a way to move our data around so that it is useful to colleagues.”

-Dr. Michael Berens, Senior Investigator, Translational Genomics Research Institute (TGEN)

Nine leading research institutions are currently partnering in a study to better understand how genetic differences in brain tumors can help predict the most effective treatment option for individual patients. The study, called the Ivy Genomics-Based Medicine Project (Ivy G.B.M. Project) is funded by the Ben and Catherine Ivy Foundation (Ivy Foundation). Investigators are currently completing the first, preclinical stage of the project, and data generated by their ongoing work will be used to structure a phase II clinical trial.

In addition to advancing personalized medicine approaches to treat cancer, the study is a powerful demonstration of what Mike Berens, Ph.D., Senior Investigator at theTranslational Genomics Research Institute (TGEN) and a Principal Investigator on the study, refers to as “data diffusion.”

He explains, “Historically, the ease of data diffusion, or shared knowledge, has an enormous impact on innovation. The most proximal value from public disclosure is that our colleagues are informed about what we find, and that time and resources are not wasted repeating studies that have already been done. But more significantly—and this goes to the heart of why collaborative efforts are so meaningful—is that others who are designing molecularly-guided therapeutic approaches will have access to our data. Information sharing churns the community for personalized therapeutics in a positive way by putting more data sets out there.”

Participant Needs

Information support needs for the study were driven by the diversity and number of participating organizations. Requirements included uniform data collection and reporting as well as the ability to share information quickly among the participants, who were each using different in-house systems to manage their work.

Brent Gendleman, President and CEO of 5 AM Solutions, the firm providing IT support to the project, noted, “In addition to the technology needs to share and analyze data, Ivy needed technology that would support their goal of transitioning the business model of science to something more transparent and milestone driven.”

Support from caBIG®

In the collaborative spirit of caBIG®, Gendleman and his team leveraged multiple resources to create a customized IT toolbox for the project, using free applications from Google and caBIG®, and relying heavily on 5AM’s Glassbox® technology, to facilitate communications among participants, enable clinical data capture, track the distribution of drugs from a central pharmacy, compile and analyze array data, and share information back to investigators.

Gendleman noted:  “One of our goals as a Support Service Provider is to make sure that the investments the NCI is making into caBIG® tools, infrastructure, and technology are used wherever appropriate and proliferated out to the research world. Added to which, no one wants to reinvent the wheel when they don’t have to!”

He continued, “caArray already existed with the capabilities needed to support the project, and we were able to use the NCI’s own instance.”

The data also resides on caGrid and, at the conclusion of the study, will be made public to the research community at the “click of a button.”

“That ability to share back to the community is crucial,” stressed Berens.

The Bottom Line

Ivy Foundation founder Catherine Ivy discussed the potential benefits to patients in a press release issued at the launch of the study: “The end goal of this research initiative is to…provide physicians with the tools they need to offer brain tumor patients the most effective treatment options based on the specific genetic profile of their tumor.”

Added Dr. Berens, “The size, scope and potential impact this project will have for patients with brain cancer is simply huge.”

Dr. Berens will discuss the study in an upcoming presentation at Bio IT World. Click herefor details on this and other caBIG® presentations onsite.

Ivy G.B.M. Participants

Case Western Reserve University School of Medicine
Henry Ford Hospital
Mayo Clinic
M.D. Anderson Cancer Center
The Ohio State University
Translational Genomics Research Institute
University of Alabama at Birmingham
University of California, San Francisco
Van Andel Research Institute