by Ken Alltucker

A local brain-cancer foundation’s $10 million in grants to TGen started with a question: Why do 2 percent of people with an aggressive type of brain cancer defy the odds and live much longer than others?

Researchers at Translational Genomics Research Institute, or TGen, will use funding from Scottsdale-based Ben & Catherine Ivy Foundation to complete a five-year study that aims to uncover genetic clues to glioblastoma multiforme. The aggressive brain cancer has a median survival rate of about 18 months, though about 2 percent of disease-sufferers live longer.

“Everyone asks how we can cure this disease by focusing on the 98 percent” of people who die within 18 months of diagnosis, said Catherine (Bracken) Ivy, founder and president of the Ivy Foundation. “Nobody has researched why the 2 percent live longer. Genomically, what is the difference?”

The Ivy Foundation will also underwrite a personalized medicine study by TGen that will match brain-cancer patients with drugs based on their genetic makeup.

A pilot study will start with 15 people diagnosed with brain cancer and use whole genome sequencing, which compares the genetic sequence of tumor cells with healthy cells to uncover genetic triggers for the disease. Based on that genetic information, people will likely receive investigational drugs in hopes of halting the disease.

After researchers gather information from the first 15 patients, they will conduct a feasibility study of 30 patients followed by a clinical trial with 70 patients, according to TGen. The study will involve a clinical-trials consortium of more than a half-dozen universities and groups funded by the Ivy Foundation.

Jeffrey Trent, TGen’s president and research director, said that a study with 100 or more people would make it one of the largest personalized-medicine trials.

Trent said that foundations focused on specific diseases will be an increasingly important source of funding for clinical trials that use personalized medicine. Research involving whole genome sequencing, in particular, can be painstaking and expensive, although technology has driven costs lower.
“Groups that fund research that augment (National Institutes of Health) are a huge part of the landscape,” Trent said.

The Ivy Foundation moved from the San Francisco Bay area to Scottsdale earlier this year and has funded more than $50 million in brain-cancer research in the U.S. and Canada. Its goal is to double life expectancy of glioblastoma patients from 18 to 36 months over the next seven years.
Ivy, a Phoenix native, launched the foundation in 2005 to honor her late husband, Ben Ivy, who died four months after being diagnosed with glioblastoma. She wants to expand access to clinical trails for Arizona residents with brain cancer.

“When you are sick, you want to be home,” Ivy said. “One of my primary objectives is to provide access to top clinical trials in Arizona

“I want more available for the people of Arizona.”

The Republic | azcentral.com