Chronic Traumatic Encephalopathy FAQs

Frequently Asked Questions about Chronic Traumatic Encephalopathy

What is CTE?
How do you get CTE? Can I get CTE from one concussion/hit to the head?
What is a concussion?
What are the symptoms of CTE??
I recently had a concussion, and I am suffering from a number of the symptoms listed above. Do I have CTE?
If I have the symptoms of CTE, do I have the disease itself?
How is CTE diagnosed?
Can I be evaluated at the BU CTE Center?
Can you refer me to a doctor?
Can CTE be cured? What can I do if I think I have CTE?
What’s the difference between CTE and Alzheimer’s disease (AD)?
What can I do to help/how can I become involved in research?
Do I have to be a high level amateur or professional athlete to participate in your research?
Can I participate in the Brain Donation Registry?
Can I participate in the LEGEND study?
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What is CTE?

Chronic Traumatic Encephalopathy (CTE) is a progressive degenerative disease of the brain found in people with a history of repetitive brain trauma, including symptomatic concussions as well as subconcussive hits to the head that do not cause symptoms. CTE has been known to affect boxers since the 1920’s (when it was termed punch drunk syndrome or dementia pugilistica). However, in recent years the disease has been found in other athletes, including football and hockey players, as well as in military veterans. CTE is not limited to professional athletes; it has also been found in athletes who did not play sports after high school or college. The repeated brain trauma triggers progressive degeneration of the brain tissue, including the build-up of an abnormal protein called tau. The brain degeneration is associated with common symptoms of CTE including memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, suicidality, parkinsonism, and eventually progressive dementia. These symptoms often begin years, or even decades after the last brain trauma or end of active athletic involvement.

How do you get CTE? Can I get CTE from one concussion/hit to the head?

We believe CTE is caused by repetitive brain trauma. This trauma includes both concussions that cause symptoms and subconcussive hits to the head that cause no symptoms. At this time the number or type of hits to the head needed to trigger degenerative changes of the brain is unknown. In addition, it is likely that other factors, such as genetics, may play a role in the development of CTE, as not everyone with a history of repeated brain trauma develops this disease. However, these other factors are not yet understood.

What is a concussion?

A concussion has occurred any time you have had a blow to the head that caused you to have symptoms for any amount of time. You do NOT need to have lost consciousness to have a concussion. These symptoms include blurred or double vision, seeing stars, sensitivity to light or noise, headache, dizziness or balance problems, nausea, vomiting, trouble sleeping, fatigue, confusion, difficulty remembering, difficulty concentrating, or loss of consciousness. A concussion has also occurred when a person gets a “ding” or gets their “bell rung.”

What are the symptoms of CTE?

The symptoms of CTE include memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, anxiety, suicidality, parkinsonism, and, eventually, progressive dementia. These symptoms often begin years or even decades after the last brain trauma or end of active athletic involvement.

I recently had a concussion, and I am suffering from a number of the symptoms listed above. Do I have CTE?

The symptoms of CTE generally do not present until years or decades after the brain trauma occurred or after one stops actively playing contact sports. While most concussion symptoms resolve within a few weeks, the symptoms can last for months or, in severe cases, even years. When this occurs, it is called post-concussion syndrome. Post-concussion syndrome is different than CTE, and the symptoms of post-concussive syndrome usually resolve years or decades before the onset of CTE symptoms. If you believe you are suffering from either an acute concussion or post-concussion syndrome, contact your physician.

For more information on concussions, visit the Center for Disease Control (CDC) website or the Concussion Legacy Foundation post-concussion syndrome resource center. For more information on medical providers and support in your area, reach out to the Concussion Legacy Foundation HelpLine.

If I have the symptoms of CTE, do I have the disease itself?

Just because you have some or many of the symptoms of CTE does not necessarily mean that you have the disease itself. There are many possible causes of these types of symptoms. If you are having difficulties, you should speak with your primary care or specialist physician.

How is CTE diagnosed?

At this time CTE can only be diagnosed after death by postmortem neuropathological analysis. Right now there is no known way to use MRI, CT, or other brain imaging methods to diagnose CTE. The CTE Center is actively conducting research aimed at learning how to diagnose CTE during life. For more information on this research, please visit the BU CTE Center website or the Concussion Legacy Foundation Research Registry to register for updates on ongoing clinical research opportunities.

Can I be evaluated at the BU CTE Center?

The BU CTE Center is a research group. At this point in time we do not offer clinical services. The best first step, if you are seeking clinical evaluation, is to speak to your primary care physician. For assistance finding medical providers and support in your area, reach out to the Concussion Legacy Foundation HelpLine.

Can you refer me to a doctor?

Unfortunately, as a small research group, the CTE Center is unable to keep a comprehensive list of doctors across the country who are familiar with brain injury and related issues. For more information on medical providers and support in your area, reach out to the Concussion Legacy Foundation HelpLine.

Can CTE be cured? What can I do if I think I have CTE?

Unfortunately at this time there is no cure for CTE. However, the CTE Center is currently conducting ongoing clinical research aimed at discovering how CTE develops and progresses, risk factors for the development of the disease, and how to diagnose the disease during life. The symptoms of CTE, such as depression and anxiety, can be treated individually. If you believe you may have CTE, please talk with your physician. For more information on medical providers and support in your area, reach out to the Concussion Legacy Foundation HelpLine.

What’s the difference between CTE and Alzheimer’s disease (AD)?

Although there are some similarities between CTE and Alzheimer’s disease (AD), significant differences exist. The symptoms of CTE generally present earlier (in one’s 40s) than those of AD (in one’s 60s). The initial and most central symptoms in AD involve memory problems, while the first symptoms of CTE generally involve problems with judgment, reasoning, problem solving, impulse control, and aggression. In addition, these diseases are found to be different in postmortem neuropathological findings.

What can I do to help/how can I become involved in research?

For more information on the CTE Center’s current clinical research, please visit the BU CTE Center’s website. The CTE Center also has a brain bank that studies postmortem brain and spinal cord tissue to better understand the effects of repeated brain trauma. Current and former athletes and military personnel of all ages and levels may be eligible to pledge to donate their brain and spinal cord to the BU CTE Center after death. Being a brain donor is similar to being an organ donor, and the procedure is done in such a way that the donor may have an open casket if desired. BU CTE Center personnel understand that this is a difficult time for the family of the donor, and they work hard to make the donation process as easy as possible for the family. For more information visit the BU CTE Center’s website or PledgeMyBrain.org.

For questions regarding your Brain Donation Registry Card, please be advised that we are in the process of transitioning to digital brain donor cards. No new physical brain donor cards will be mailed out at this time. We look forward to introducing you to our new brain donor card experience in the coming months. Thank you for your patience and continued support of brain donation and clinical research. Please email cardrequest@concussionfoundation.org for more information.

Do I have to be a high level amateur or professional athlete to participate in your research?

No. The CTE Center welcomes athletes of all sports and levels to participate in our research. Although some studies are restricted to specific sports and levels, other studies are open to anyone with a history of participation in organized sports or military service.

Can I participate in the Brain Donation Registry?

If you have a history of participation in organized sports and/or a history of participation in the military, you may be eligible to participate in the brain donation registry. For more information, please contact the Brain Donation Registry coordinator Evan Nair by phone at 617-358-5996 or Madeline Uretsky by phone at 617-358-6027. You can reach both Evan and Madeline on their 24/7 voicemail/pager at 617-992-0615.

Can I participate in the LEGEND study?

If you have a history of participation in organized sports, you may be eligible to participate in the LEGEND study. For more information, please contact the LEGEND study coordinator at Legend@bu.edu or call (617) 358-6563