Why do some athletes who suffer repeated head injuries develop a devastating brain disease, while others seem immune? And can this degenerative disease be treated or even prevented?
A team of scientists from across the country gathered Wednesday at Boston University School of Medicine to launch a pioneering study aimed at detecting chronic traumatic encephalopathy, or CTE, a disease that silently destroys the minds of athletes after years of repetitive blows to the head. But this time, unlike so much of the research preceding it, the studies will be conducted in people who are alive.
Hallmark signs of CTE have been detected in the brains of at least 180 deceased athletes, many of them former football players. Notably, that includes evidence of an abnormal buildup of a protein called tau, which appears in a distinct pattern not seen in other diseases.
Despite years of research, much of it at BU, CTE can be diagnosed only after death, through microscopic exams of brain tissue.
“I now feel like we are in the toddler phase of CTE” research, Robert Stern, a brain specialist at BU and a lead investigator of the study, told the gathering.
“We need to be able to move to intervention and treatment,” Stern said. “Diagnosis during life is that critical next step.”
The $16 million study, called DIAGNOSE CTE, will be the largest to date of living former football players and includes 240 men ages 45 to 74. The first participant is expected to be enrolled in July, and the project involves about 50 investigators representing 17 institutions.
Researchers say findings from the seven-year study, paid for by the National Institute of Neurological Disorders and Stroke, might be used to help veterans with brain injuries and others who suffer repetitive head traumas. The scientists pledge to share their data monthly with researchers around the world.
“We want to protect against head injury wherever it occurs,” said Dr. Jeffrey Cummings, director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas. Cummings, one of four lead investigators in the CTE study, said his center has been tracking hundreds of professional fighters. The scientists believe they are already witnessing early signs of brain impairments among those still competing, with greater impairments linked to more extensive fight history.
The CTE study will examine 120 former players from the National Football League, in addition to 60 former college football players. Athletes with and without symptoms of CTE will be included.
Another 60 men who have never participated in contact sports, or never incurred brain injuries, will also be tracked and be compared with the former football players.
Participants will undergo brain scans, blood work, collection of saliva samples, neurological exams, and psychiatric screenings. Participants will also be asked to provide family history and detail use of alcohol and other drugs.
The tests are aimed at finding biomarkers in blood, saliva, spinal fluid, and brain scans that would signal changes in the brain associated with CTE. Researchers need these markers to develop a widely agreed-upon method for diagnosis.
Ultimately, the hope is to detect CTE before brain damage occurs, and even before symptoms, in much the same way physicians screen patients for high cholesterol and prescribe treatments to ward off further cardiovascular damage.
Scientists believe repetitive head injuries might cause a cascade of chemical changes that sparks the tau buildup. That buildup prevents the brain’s nerve cells from making normal connections, causing erratic behavior, memory loss, depression, and ultimately dementia.
Tim Fox, a 62-year-old former member of the New England Patriots known for his aggressive play, describes himself as a “living, breathing petri dish for CTE research.” Fox told the scientists Wednesday he suffered a significant number of head injuries during his decade in the NFL and now has a frightening array of problems with memory and moods.
“My irritability factor has gone through the roof, and I used to be a patient guy,” Fox said. “Just trying to get organized is a tremendous challenge.”
Fox participated in an earlier BU study of CTE.
“I would do anything in my power to allow you folks to get to the bottom of this,” he told the scientists.
The participants in the new study will be tracked for three years at sites in Arizona, Las Vegas, New York, and in Boston at BU and at Brigham and Women’s Hospital, where the brain imaging tests will be analyzed.
Researchers aim to publish their earliest findings in medical journals by late 2019, with later results slated for 2022.
CTE has received extensive media attention in recent months, with the December debut of the movie, “Concussion,” the story of a brain scientist who fought NFL efforts more than a decade ago to suppress his CTE research.
In March, the NFL’s top health and safety officer publicly acknowledged a link between football and CTE, the first such admission from a senior league official.
Then, a congressional committee last week issued a scathing report saying it found evidence top NFL officials improperly tried to influence the selection of scientists for government-funded research on CTE. That interference, the report found, concerned the grant eventually awarded to the team led by BU’s Stern.
Kay Lazar can be reached at firstname.lastname@example.org .