UNITE Brain Bank publishes largest CTE case series ever in youth, high school and college athletes who died young

By Dr. Chris Nowinski, Concussion Legacy Foundation co-founder and CEO

This week, I coauthored the largest study ever of CTE in youth, high school and college athletes who died before the age of 30, published here in JAMA Neurology. Led by the brilliant Dr. Ann McKee and the scientists of the Boston University CTE Center and UNITE Brain Bank, and made possible by our amazing Legacy families who donated the brain of a loved one, this study provides important learnings:

1. Nearly half (41.4%) of 152 cases had CTE. As Dr. McKee said, this study clearly shows that the pathology of CTE starts early. The fact that more than 40% of young contact and collision sport athletes in the UNITE Brain Bank have CTE is remarkable - considering that studies of community brain banks show that fewer than 1% of the general population has CTE. To me, it is powerful that so many families correctly predicted their child or husband had CTE. It suggests three possible things, at least one of which must be true:

• CTE causes telltale symptoms in young people.

• CTE does not cause symptoms in young people, but the head hits and concussions those athletes suffered are causing chronic symptoms.

• CTE is far more widespread in young people with high exposure to contact sports than we want to believe.

We need to study more young brain donors not exposed to contact and collision sports, to better understand which symptoms are related to concussions, RHI, and CTE.

2. The study includes the first women’s soccer player diagnosed with CTE, a 28-year-old collegiate soccer player from the United States whose identity remains private. Last month, the first female athlete was diagnosed with CTE by the Australian Sports Brain Bank, which we cofounded in 2018. Heather Anderson was a 28-year-old Australian Football League player. With two young female athletes diagnosed with CTE in two months, we look forward to engaging with women’s sports organizations and leaders to discuss CTE Prevention Protocols.

3. The majority of subjects did not have CTE. “The study suggests that some of the symptoms these young athletes are experiencing are not caused by the early tau pathology of CTE,” said Dr. McKee. “It is imperative that young athletes who are experiencing neuropsychiatric symptoms seek out care, as it is likely that the symptoms can be reduced with effective management and follow-up.” If you or someone you love is experiencing symptoms, please reach out to the CLF HelpLine for doctor recommendations and support. 

• Clinical symptoms were common among the athletes, whether or not they had CTE, including: depression (70.0%), apathy (71.3%), difficulty controlling behaviors (56.8%), and problems with decision making (54.5%). Substance abuse also was frequent, with alcohol abuse present in 42.9% and drug abuse in 38.3%.

4. Nearly all the young athletes had mild CTE, stages 1 and 2; although 3 donors had CTE stage 3. (There are 4 possible stages of CTE with stage 4 being the most severe). To put that in perspective, three college football players who died before 30 had more severe CTE pathology than Junior Seau. In those with CTE, there was often other evidence of brain injury, including the presence of a cavum septum pellucidum, enlargement of the ventricles, and more perivascular macrophages in the white matter. 

5. CTE is not just a problem for professionals. Amateur athletes comprised 71.4% of those diagnosed with CTE, and included American football, ice hockey, soccer, and rugby players, and wrestlers. Those diagnosed with CTE were older (average age at death 25.3 years vs. 21.4) and had significantly more years of exposure to contact sports (11.6 vs 8.8 years). Like all brain bank studies, the brain donors are different from the general population of young athletes, in part because they are more likely to have symptoms. CTE cannot yet be diagnosed in the living, and the true prevalence of CTE in any population remains unknown.

6. We cannot thank our donor families enough. I still call families after learning they have lost a loved one, and it’s hardest calling parents who have lost a child and young wives who have lost a husband, often with young children. Almost all these deaths are unexpected, so families are less likely to initiate brain donation by calling BU – instead, they hear from me within 72 hours of losing their loved one. The fact that we had 152 people in this study reminds me of the best of humanity – these families, in their saddest moments, were still focused on helping others.

7. Finally, I have tremendous respect for Mike and Kia Locksley sharing that their son Meiko was part of the study and diagnosed with CTE. Meiko was murdered in 2017 at the age of 25. Mike is the head football coach at the University of Maryland. Watch Mike and Kia share with the New York Times why they went public, and what they hope will come from this research.

If this study makes you as uncomfortable as it makes me and you want to make a difference today, sign up for our research registry, or consider making a donation.

For more information about the BU CTE Center, the UNITE Brain Bank, and CTE, please visit www.bu.edu/cte. The study was primarily funded by The Department of Veterans Affairs, NINDS and NIA, part of NIH, the Buoniconti Foundation, and the Mac Parkman Foundation.