Dozens of researchers nationwide will team up to try to find a way to diagnose chronic traumatic encephalopathy in living patients, with the help of a $16 million grant from from the National Institutes of Health.
The NIH grant, announced Tuesday, will fund a seven-year study on the degenerative brain disease, which has been identified posthumously in scores of former football players. CTE is making headlines in part because of the upcoming movie “Concussion,” which tells the story of the doctor who identified the disease in the brain of a deceased NFL star, “Iron Mike” Webster, in 2002.
CTE can now only be diagnosed after death, by examining a person’s brain. The disease has been found only in individuals who sustained many hits to the head, but scientists don’t know precisely what causes it.
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The NIH had planned to use a portion of a $30 million grant from the NFL to fund the new research, ESPN reported on Tuesday. But the NFL nixed that idea, according to ESPN, because of discomfort with the lead researcher in the new study: Robert Stern, co-director of a CTE research center at Boston University.
An NFL spokesperson said the league “has no ‘veto power'” over how the $30 million is used and said the NIH made all funding decisions on the study. The Foundation for the National Institutes of Health issued a statement saying that the league “was willing to contribute” to the new study. But neither the foundation nor the NFL answered specific questions Tuesday about what such a contribution might have involved or why it didn’t come to pass.
In recent months, Dr. Betsy Nabel, the NFL’s chief health and medical adviser, has criticized Boston University researchers for their work on another aspect of CTE research — a brain bank that contains many specimens from deceased NFL players.
Nabel told STAT this fall that the BU team has “selectively gathered brains,” choosing to focus “on individuals who had the strongest track record of head trauma or are on the extreme end of the spectrum.”
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Nabel said the league’s neurology experts are “very concerned” about bias in the brain bank. She said she worried researchers are “making foregone conclusions about cause and effect without any direct evidence or a control group.”
Nabel did not name Stern specifically in her critique. The brain bank that made headlines in the fall for finding CTE in 96 percent of the former NFL players it studied is under the direction of Dr. Ann McKee, one of Stern’s colleagues.
“For better or for worse, the media has really glommed onto these messages and created a lot of concern in the general public,” Nabel said.
Stern told STAT this fall that the brain bank isn’t meant to be representative and isn’t “a way to learn about the prevalence of the disease.” Instead, the goal is to learn more about how the disease works in individuals who have it.
The new, NIH-funded study has nothing to do with the brain bank.
Researchers in 17 centers across the country will examine 120 former NFL players and 60 former college football players, using a variety of tests and imaging technologies to look for signs of CTE. Participants will be tested initially, and then again three years later, to see how their brains change over time. They will be compared to a control group of 60 individuals who did not play contact sports or experience brain trauma.
Stern has done similar research before. In October, he concluded a study, known as DETECT, that examined approximately 100 former NFL players to advance understanding of CTE. Stern described the new initiative as “the DETECT study on steroids.”
Karen Weintraub contributed to this report.