29 March 2023

Chronic traumatic encephalopathy (CTE) is the name given to a pathology that is found in the brains of some people exposed to repetitive head injuries. The ASBB is dedicated to the understanding of CTE.

Many people have already donated or pledged their brains to us at the ASBB and this generous gift is enabling research to better understand this disease. Our mission at ASBB is to use and promote research to help diagnose, prevent, monitor, and treat CTE. At the heart of our goals is the development of clinical tests that can diagnose CTE in people while they are living.

The ASBB is aware of recent public statements suggesting that CTE can be diagnosed in people who are still living. This has caused confusion and sometimes distress amongst our brain pledgers and the families of our brain donors.  At present the definitive diagnosis of CTE remains one that can only be made after death, and together with our pledgers and donor families we are working to change this.

There are currently NO tests that can diagnose CTE during life. The symptoms we believe may be caused by CTE can overlap with many other conditions, and many of them are treatable. In some cases, CTE has been found in people that have experienced no symptoms at all.

Criteria for a clinical syndrome, Traumatic Encephalopathy Syndrome (TES), are being developed to help researchers understand the potential symptoms caused by CTE during life. The creators of TES criteria have encouraged the medical community to only use the TES criteria in research settings, as it is not yet accurate enough to deploy in the clinic.

PET scanning has been proposed by some as a way to diagnose CTE. Unfortunately, this is not true. PET is a powerful tool that can reveal abnormalities in the brain, but it is not yet able to test for CTE. We are actively working in this area to try and change this.

If you or a loved one would like additional education on CTE or a referral to a provider trained to support individuals exposed to concussions or repetitive head impacts, please reach out to our collaborators at the Concussion Legacy Foundation Australia via the HelpLine or via email. 

If you feel like you may be in crisis and would like to talk to someone please call Lifeline on 13 11 14