BU CTE Center Research Fellow Suzan van Amerongen’s latest research is a case study on CTE in a former professional Dutch soccer player
By Cassandra E. Ferreira, BU CTE Center
Suzan van Amerongen is a Research Fellow at the Boston University CTE Center studying under Director of Clinical Research Robert Stern, PhD. She is the first author of the new paper “Severe CTE and TDP-43 pathology in a former professional soccer player with dementia: a clinicopathological case report and review of the literature” that was published on May 10, 2023, in Acta Neuropathologica Communications.
This case study describes a Dutch former soccer player diagnosed during life with young-onset dementia. After his death, a post-mortem analysis showed “severe phosphorylated tau (p-tau) abnormalities fulfilling the neuropathological criteria for high-stage CTE.” Her paper also addresses the lack of CTE research in soccer players and discusses that being able to diagnose CTE in life would increase the amount of research done on soccer players at all levels.
I asked van Amerongen about her paper and research, her career as a whole, and how she began working with the BU CTE Center from another continent.
Some people might get a bit confused since you are living in Europe. Could you explain your professional relationship with the BU CTE Center?
Since 2020, I have been working as a medical doctor at the Alzheimer Center Amsterdam, where I am also following a PhD program on the long-term consequences of repetitive head impacts. As part of my PhD program, I was able to get in touch with Dr. Bob Stern. Eventually, Dr. Stern offered me a position as a research fellow for one year at the CTE Center. So, after finishing this research fellowship – which will be in September – I have one more year to finish my PhD back in the Netherlands and I hope to start a residency in neurology.
Neurology seems to be your path. What’s so special about neurology? Why is it such a passion for you?
It is both a passion as well as a personal story. In my first years in med school, all those topics on neurology and the brain attracted me a lot. This was confirmed after doing my rotation at the neurology department, I really felt that neurology would become my new career path. But then, all of a sudden, my boyfriend had a hemorrhagic stroke. After that moment, I felt like it was too close and emotional. We often felt very helpless during this period. Because the thing with most of the neurological diseases is that you are not able to cure them or there is no treatment for it. Then that feeling kind of transferred into something like, ‘Okay but if I am at least able to give people a feeling that I can mean something, or I can support or give him at least some hope and support, then this may give a lot of reward.’
What made you choose to write a paper on this particular case?
The story began 10 years ago, when this patient visited the memory clinic in Amsterdam. His neurologist, one of my supervisors, really believed he suffered from CTE. This patient was actually the inspiration to set up a study to investigate individuals at risk for CTE. When I joined the Center in 2020 to work for this study, they told me about his story and disease. I was very touched but also became curious and interested. What is actually going on in his brain and is this associated with CTE? After he passed away, the family decided to donate his brain to our center. Together with the neuropathologist, we looked into it very thoroughly and believed he had a lot of very interesting pathology. We felt that this is so important for the field, especially in the Netherlands, where CTE hasn’t been a big topic yet. We also collected a lot of very interesting clinical data over the years. Besides, CTE in soccer players hasn’t been reported to the extent it has in American football. So even though it’s one case, we felt the urgency to present these findings, highlight the importance of brain donation, and the importance of a good diagnostic process.
In your paper, you ruled out other neurodegenerative diseases. Could you walk me through how you ruled out those diseases, such as Alzheimer’s disease?
That’s a really good question. In this case particularly, the clinical picture fit well with Alzheimer’s disease. There was progressive cognitive decline, especially decline in memory and executive functioning. We also found brain atrophy on the MRI scan that could fit Alzheimer’s disease. Nowadays, we have good diagnostic tools to detect the Alzheimer protein (‘amyloid’). In this patient, we investigated this with both a specific brain scan (PET scan) and by testing cerebrospinal fluid. Both of these tests were normal, so we could basically rule out Alzheimer’s disease. But then starts the puzzle, because not all other neurodegenerative diseases have such accurate diagnostic tools, especially not CTE. You try to combine the clinical history with findings from tests and brain scans, or sometimes genetic testing. We cannot always make a definite diagnosis during life, but often which disease is the most likely.
For CTE, the most important one is asking about a history of repetitive head impacts. That sounds very logical, but especially in our memory clinic, this not always asked.
In your paper, you talk about the underrepresentation of soccer players in CTE research. Could you expand on that?
We find that there is still less recognition for soccer as a potential risk for long term consequences in brain health and potentially CTE. There are still discussions about what the actual risks are. There have been studies that showed higher risk of neurodegenerative diseases in professional soccer players, which is obviously a very specific group. But both researchers as well as soccer federations are interested in more. What are the risks for the broader soccer populations – especially with so many amateur level soccer players. There is still so much to find out on this topic.
At the start of this process, what was this paper’s main goal?
One of the most important goals was to increase awareness of CTE in soccer. Starting with the publication of these kinds of cases, gives inspiration and guidance to build up bigger cohorts. Besides that, we wanted to demonstrate that, even though you cannot diagnose CTE during life, it can be very helpful to rule out other diseases with the possible biomarkers we have. We also wanted to show that, next to the specific CTE proteins, there seem to be other processes going on in the brain, which might be related to repetitive head impacts.
You had said that you are going into residency for neurology after you finish your PhD, do you plan on continuing research? And if so, what type of research would you want to do in the future?
That is my dream, to be able to do my residency and continue CTE research. Currently, I am mainly focusing on clinical research with athletes exposed to repetitive head impacts. In the future, I hope that brain donations will increase in the Netherlands, so I can also work on the correlation between clinical and pathological findings. Now, our cohort in Amsterdam contains over 60 participants, but I hope to expand this to be able to help all these participants with their questions and worries about brain damage, and to contribute to all the research questions that are remaining.
If you would like to read the full paper “Severe CTE and TDP-43 pathology in a former professional soccer player with dementia: a clinicopathological case report and review of the literature,” click here.
If you or someone you know is 40 or older and played soccer or tackle football at any level, please go to www.HITSS.org and register for the virtual Head Impact and Trauma Surveillance Study (HITSS) to participate in our research.