The CTE Prevalence Study

How common is Chronic Traumatic Encephalopathy (CTE)? We don't know, but the Concussion Legacy Foundation (CLF) is ready to find the answer - with your help. 

Scientists need to understand the prevalence (rate) of CTE in the general population to appreciate the scope of the problem. However, because science does not yet have an accurate diagnostic test for CTE in the living, we have to rely on brain banks. But brain bank samples are well-known for having what's called acquisition bias: your family is more likely to donate your brain if you had neurological symptoms, which could lead to an overestimate of the prevalence. Therefore, scientists still debate whether CTE prevalence is as low as ~0% or as high as 12%.

Fundraising was completed in 2019 and the study is ongoing.

CLF has identified one brain bank that has the ideal sample for estimating the global prevalence of CTE: the prestigious Biobank for Aging Studies at the University of São Paulo in Brazil, a member of the CLF Global Brain Bank. For years, a team of scientists including neuropathologists Dr. Roberta Rodriguez and Dr. Lea Grinberg have been recruiting brain donors for a study on normal aging, which has already produced groundbreaking results in the field. Donor families have been approached regardless of symptoms and told that every brain is equally valuable. They now have 1,500 brains of Brazilians age 50+.

We have an unprecedented opportunity to advance our understanding of CTE by learning the global burden of disease by studying this cohort, and at a fraction of the cost it would take to study in the US. Each brain can be studied in Brazil for just $100. In the US it easily costs >10x as much - and due to the popularity of soccer and Jiu-Jitsu in Brazil, we anticipate the CTE rate will be similar to other countries, like the US, where contact sports are popular.

CLF has committed to raising $50,000 to study 500 male brains. We are starting with males as CTE is more prevalent in men due to a longer historical exposure to contact sports and military combat. If we are successful, it will open the door for an additional mirror study on the 1,000 female brains currently at the brain bank.

We are honored that Stu Porter, CEO of Denham Capital, has agreed to provide a Matching Gift Challenge up to $25,000, which will cover 250 brains. With Stu's leadership and the help of CLF supporters, we completed fundraising for the additional $25,000 study the remaining 250 brains. The study is underway!

Leading to a Safer Future

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