Chapter 3Long-term impacts and ensuring the integrity of research
3.1This chapter firstly explores the views that inquiry participants have on the impact of head trauma, including concussion, on long-term brain health, and its links to neurodegenerative conditions, such as Chronic Traumatic Encephalopathy (CTE). It then considers the very personal and distressing stories of a number of individuals who suffered head trauma during their sporting careers and who either were still, or were prior to their passing, suffering from the effects of repeated head trauma and neurodegenerative disease. It also canvasses the perspectives that Australian Government agencies and several national sporting organisations have on the link between repeated head trauma and long-term health impacts.
3.2This chapter also discusses the various research initiatives that are currently underway, or are about to commence, and their funding models—including suggestions of conflicts of interest and a lack of independence. It concludes with the committee’s view on the issues discussed in the chapter, along with a number of recommendations.
The link between concussion and repeated head trauma and long-term health impacts
3.3The committee heard a range of views from inquiry participants regarding the association between concussion and repeated head trauma and subsequent health implications, such as CTE, post‑traumatic headache, dementia, and other neurological and health impacts.
Views of medical professionals, researchers, and other experts
3.4Medical professionals, researchers and other experts were in broad agreement that at a minimum, there is an association between sport-related concussion and repeated trauma and long-term neurological conditions.
3.5Consultant Neurologist Dr Rowena Mobbs highlighted that almost 30 years ago, the National Health and Medical Research Council (NHMRC) reported that boxing and football‑related head injuries can be associated with long-term neurological effects. She noted that despite this, such issues have been overlooked in the community, and raised concern about the lack of independent research over the years:
… our community has turned a blind eye to systematic concussion. The absence of mandatory reporting on concussion, neurological care after concussion, and stories of returning to the field too early are harrowing. Furthermore, the dearth of meaningful, fully independent, and appropriately funded research has represented a dark chapter in Australian sport.
3.6Neuroscientist Professor Alan Pearce who, over the past 15 years, has assessed hundreds of individuals with concussion/repeated head trauma at all levels of sport, has observed from his research that all athletes with a history of repetitive head trauma (whether they express ongoing concerns or not, and irrespective of the level of competitive participation) show some physiological changes compared to age-matched controls.
3.7Professor Pearce also told the committee that nearly 100 years of retrospective evidence have demonstrated the risks of repetitive head trauma with regards to CTE:
We have nearly 100 years of retrospective evidence to argue [the risk between repetitive head trauma and CTE]. I understand that people want to have prospective research studies, but we should also be looking back at the research that we've done for nearly, as I said, 100 years internationally. I don't think this is just a sport-by-sport issue. It's a repeated head trauma, irrespective of whether it's a football, basketball, netball, cricket ball, anything.
3.8Dr Alexandra Veuthey PhD, an attorney specialising in sports law, similarly noted that the association between head trauma in sport and long‑term neurodegenerative disease was first discovered almost a century ago. She submitted that ‘convincing scientific studies postulating in favour of the acknowledgement of an extensive causal link are accumulating day by day’ and added that multiple CTE cases have now been diagnosed in a range of team sports such as American football, Canadian football, Australian Rules football, football, ice hockey, baseball, rugby union and rugby league. Dr Veuthey also outlined that links between multiple head injuries and Alzheimer’s disease have been discussed within the scientific community.
3.9Whilst Dr Veuthey noted that the full extent of long-term impacts of head trauma on athletes, and the role of other potential risk factors (such as genetic predisposition, the use of illicit substances, alcohol consumption and age) remain unknown, she also made it clear that government organisations and sports governing bodies can no longer deny the long-term risks:
It is crucial that sports medicine bodies and governmental organisations, such as Sports Medicine Australia (SMA) and the Australian Institute of Sport (AIS), acknowledge the potential long-term risks of head injuries, as their US counterparts have already done. The same is true for Australian sports governing bodies, whose denial is no longer tenable today.
3.10Injury epidemiologist, Dr Reidar Lystad made a similar point, submitting that the scientific evidence for a causal relationship between repetitive head trauma and long-term health impacts, including neurodegenerative diseases such as CTE, is imperfect but undeniable. He added that:
Skeptics [sic] who deny or dismiss the causal relationship often rely on either or both an outdated or selective body of evidence and inappropriate frameworks and standards for evaluating causation involving environmental exposures. Had we used the same approach in the case of tobacco smoking and lung cancer – or asbestos and mesothelioma, or thalidomide and birth defects – then we would have dismissed these causal relationships too.
3.11The Concussion Legacy Foundation, which was founded by Dr Chris Nowinski, a behavioural neuroscientist and former American footballer and professional wrestler, noted that a review published in 2022 which explored the link between repeated heard trauma and CTE concluded:
We have the highest confidence in the conclusion that RHI [ repetitive head impacts] causes CTE. We encourage the medical, scientific and public health communities to now act under the premise of a causal relationship and take immediate action to prevent CTE, minimize risk, and develop therapeutics to slow or stop disease progression.
3.12The Concussion Legacy Foundation also submitted that besides CTE, long-term participation in contact sports is associated with an increased risk of dementia, motor neuron disease, and Lewy-body disease.
3.13Brain Injury Australia submitted that having a history of serious or repeated concussions has been linked to long-term complications, including chronic traumatic encephalopathy, cognitive impairment, early onset dementia, movement disorders, psychiatric disorders, and, potentially, motor neuron disease, though it also acknowledged the potential role of other variables and risk factors such as genetic predisposition and alcohol and other drug use.
3.14Dementia Australia submitted that current research indicates a causal link between repeated head injuries ‘along a spectrum of severity and an increased risk of developing a range of neurological conditions, including CTE’.
3.15Neuroscientist Professor Robert Vink AM, who has over 30 years of experience in traumatic brain injury research, explained that it seems clear that repetitive head injury in professional football athletes is a major risk factor for CTE development, but he also cautioned that current incidence data may not be representative of the risk to the broader population:
There have been several scientific studies demonstrating the presence of CTE in brains donated to brain banks, with those reporting positive findings in former professional athletes receiving considerable media attention over recent years. While not denying the presence of CTE in these studies, the incidence data are widely considered as being skewed given that the people who donate their brains for post-mortem analysis come from a non-representative demographic and in many cases, they or their families already have concerns about the mental health of the donating individual. Nonetheless, even with this limitation, such studies are very useful for the identification of behaviours that may be associated with the development of CTE.
3.16Clinical Legal Educator and PhD candidate in the area of concussion in contact sports in Australia, Mr Leon Harris noted that players of contact sports, such as Australian football, rugby league, and rugby union have suffered from a range of neurodegenerative diseases, including CTE, Alzheimer's disease, amyotrophic lateral sclerosis—also known as Lou Gehrig's disease—Parkinson's disease, and frontotemporal lobar degeneration.He added:
Evidence indicates contact sport participants are up to four times more likely to die from some form of neurodegenerative disease than those who don’t. This is the case even after all other risk factors such as drug and alcohol abuse and heart disease for example are excluded from the cohort.
Evidence suggests the earlier a player begins to play, and the longer they play, the more likely they will develop such a condition. Studies show the risk of developing CTE increase the longer a person plays contact sport.
CTE is not an inevitable consequence of repeated head trauma but without repeated head trauma, CTE is very rare or even absent in the general population.
3.17Connectivity Traumatic Brain Injury Australia (Connectivity) submitted that there is ‘a large and growing body of studies suggesting an association between repeated head injury and long-term impacts to an individual’s mental, physical, and social well-being’ as well as high-profile, and community level, reports of sportspeople experiencing persistent and/or long-term impacts from concussions.
3.18Connectivity reported that despite this, there is insufficient high-level evidence that allows firm conclusions to be drawn about the long-term effects of concussion and repeated head injury, including CTE. It added:
Frequently cited concerns about the evidence gathered to date include a lack of adequately powered case-control longitudinal, prospective studies of CTE, and an evolving definition of chronic traumatic encephalopathy. It is unlikely that all episodes of concussion result in CTE.
3.19Concussion Australia also highlighted the need for further research. It submitted that the long-term impacts of concussion and repeated head trauma, with respect to causing CTE, was 'evidentially inconclusive' and that, although CTE had an association with concussions, the extent of that relationship was not yet known. It argued that:
To make definitive conclusions more research is required into matters such as the number of concussions that someone has suffered throughout their life, the space of time between those concussions, the age at which the concussion/s occurred and genetics.
3.20The Royal Australian College of General Practitioners (RACGP) similarly contended that there is 'currently insufficient evidence to fully understand and determine the long-term impacts of concussion and repeated head trauma' and recommended significant investment in further clinical research into the long‑term impacts of concussion and repeated head trauma in contact sports.
3.21A recently published report into concussion in sport by the United Kingdom’s House of Commons Digital, Culture, Media and Sport Committee (UK House of Commons Concussion in Sport Report) also highlighted the need for more conclusive evidence:
The need for more conclusive evidence that links brain injury to increased neurological diseases such as dementia is evident for a number of reasons. While the FIELD study showed a significant correlation between injury and incidence of disease, this was a population level study that explained neither why there was a correlation between brain injury and neurological disease nor what caused it. There is a need to understand the mechanisms by which neurological disease occurs to allow for the development of treatments that might mitigate the severity of disease or even prevent it happening at all.
Lived experiences of head trauma and health impacts including neurodegenerative disease
3.22The committee heard compelling personal evidence and lived experience accounts regarding the health impacts of sport-related concussion and repeated head trauma. This section canvasses a number of these stories.
Mr Barry Taylor—Rugby union
3.23Ms Enid Taylor and Mrs Jennifer Masters, respectively the wife and daughter of the late Barry Taylor, spoke about the impact that dementia had on their family. Ms Taylor noted that her husband had played rugby union from under sevens until he was almost in his mid-30s, and that his personality started to change later in life. She described this change as follows:
He showed signs of a change of personality at around about 60. But prior to that—we realise now he'd had CTE long before that—he had become quite aggressive. Once he was diagnosed with dementia, from then on it was horrendous. I can't begin to tell you how serious the whole scene was. He was aggressive and irrational. It was a madness; it wasn't normal. He eventually became totally dependent, incontinent and the rest, so he went into care where he was for 3½ years until he passed away at 77.
3.24After Mr Taylor passed away, his brain was donated to Boston University and examined by Dr Ann McKee, who determined that his brain size had reduced to that of a very small woman and that his brain was one of the worst five she had ever encountered.
Ms Kirby Sefo—Rugby union
3.25Ms Kirby Sefo, a former Australian Rugby sevens and Australian Wallaroos player, stated that she had sustained in excess of 40 head knocks of varying severity over her career, and spoke about the debilitating symptoms she started experiencing:
… my symptoms always present in the same order but for varying lengths of time. I begin with dizziness and hypersensitivity to light. I lose parts of my vision. I experience a loss of balance and disorientation, followed by heavy fevers and sweats and then severe vomiting. Once the vomiting settles, I'll pass out into a deep, deep sleep that can vary anywhere from 45 minutes, with the longest I've experienced being around eight hours.
There are no triggers to my episodes that I or anyone else has been able to track. They can come on at any time of the day or night, and I've been woken up from my sleep on various occasions due to the intense dizziness, before the fevers and vomiting start to occur. When these episodes occur, it is completely debilitating for me. I have about a three- to four-minute window where the initial dizziness comes on before I completely lose control of the symptoms.
3.26Ms Sefo submitted that her symptoms resulted in her being unable to work and that, in one instance, she lost her job, while in another she had to resign because she was unable to manage her symptoms. She also stated that there were times when she was hospitalised because an episode occurred in public, and an ambulance was called on her behalf.
Mr Terry Strong—Rugby league
3.27Mrs Kathy Strong spoke about her late husband, Mr Terry Strong, who was a grass-roots, amateur, semi-professional rugby league player during the 1970s and 80s, and who was later diagnosed with Lewy body dementia and REM sleep behaviour disorder. She described the impact these illnesses had on her family as follows:
With regard to the impact on the family and on me in particular, we were managing these behaviours as best we could with the medication, because, after he had the fall and went into hospital, he became psychotic and paranoid, and he was catatonic at one stage. This was during COVID, and I couldn't let the grandchildren see him. The hospital wouldn't let me in, but, in the end, they let me in because he was so bad. He had a psychotic episode that lasted three or four hours. They called me in at half past one in the morning to try and help. The boys couldn't see him; they had to get special permission from the counsellor. I couldn't allow our friends to see him, because it was so sad the way that he died.
In the end the hospital called me in and said, 'Terry's so distressed. We really need to think about starting palliative care.' And within four days he passed, which was a blessing in the end because it was so sad to see this incredibly fit and great man—great family man—end up with his brain torturing him. To watch him go downhill so quickly was very sad.
3.28An autopsy on Mr Strong’s brain indicated that he had suffered from severe late‑stage CTE—a condition which he may have had for as long as 16 years—as well as a number of other illnesses, including frontotemporal disease and Alzheimer’s disease.
Mr James Graham—Rugby league
3.29A former professional rugby league player, Mr James Graham stated that, although rugby league gave him a 'great life' and many opportunities, he believes that it is likely that it will come at cost to his health and life span:
Some of this is due to the nature of my sport, due to the environment that I was put into, the attitudes that existed around concussion and my own choices, at times, to carry on and take advantage of a system that allowed me to play six days after being knocked unconscious.
I … received the information that I'm in the bottom three percent for a certain area of the volume of my brain. I'm glad I know that information because I can look to do something about it. Unfortunately, that resource isn't there for a number of the people I used to play with and play against. I think it should be. During that time of my own ill health, I was diagnosed with depression and anxiety, and I'm now looking at possible bipolar disorder as well. It's an ongoing process, and it's something that I will likely deal with for the rest of my life.
You can't cease the decline, but you can put the brakes on things. You can certainly hit that accelerator. Unfortunately, people don't know where to turn to, they don't know what resources are available to them, and that self‑medication aspect is far too common, in my opinion, from what I've seen in the community.
Mr Shane Tuck—Australian football
3.30Ms Renee Tuck told the story of her younger brother, Mr Shane Tuck, who was a former Australian Football League (AFL) player who played 173 games, and occasional boxer who took his own life in July 2020 after a long battle with CTE. Ms Tuck said the following regarding her brother’s battle with this disease:
Shane's CTE and brain disease had been a very slow burn for him up until the last four years of his life, when it really ramped up. We watched him decline over many years, but the last two years were probably the most tormenting and traumatising for him. Shane had a lot of auditory hallucinations, which are voices. He slowly ended up on the verge of dementia. By the end, he'd lost motor skills and memory. He was very confused. He'd had two prior attempts at taking his life.
3.31Ms Tuck said it was probably one of the most traumatising and awful things she had ever witnessed in her life:
… I watched a young man be taken away physically and mentally and watched him know it as well, without having a cure or anything to lean on at that time to get anything better. Nothing worked. He was a goner. His brain was rotting on him. It was dying out like an electric field would with water over it. He was just fizzling out. We all knew that we were going to lose him, but we worked our guts out as a family to try and keep him here.
3.32The significant impact that CTE had on both Mr Tuck and the people around him was also described in a submission from Mrs Katherine Tuck, the widow of Shane Tuck:
… Shane’s psychiatric symptoms continued to worsen and as his sister Renee submitted in her statement to the Inquiry, he made two attempts at taking his life, and underwent hospitalisations and electroconvulsive therapy, as well as continued to take medications, all of which made little to no difference to his suffering.
Katherine and the children lost Shane much earlier than the day he passed. It was such a sad journey to see the loneliness of Shane’s experience from the time he retired from the AFL system and the end of the institutional support that was available as an employed player, to floundering with the ongoing symptoms of anxiety, psychosis, sleeplessness and increasingly other symptoms which we now know were caused by CTE. It was traumatic for Shane’s children to witness their father lose his grip on reality.
Mr Danny Frawley—Australian football
3.33Mrs Anita Frawley told the story of her late husband, Mr Danny Frawley, who played 240 senior matches for the professional AFL team St Kilda between 1984 and 1995:
On 9 September 2019, my husband of almost 30 years left our family home and drove his car into a tree near his hometown of Bungaree.
Five years before his death, Danny had a massive mental health breakdown. I called our family doctor, who recommended a psychiatrist. During this breakdown he did not sleep for about three weeks. He could not function and became quite childlike. He was very dependent on the girls and me, following me around the house and constantly seeking reassurance that he was going to be okay.
The subsequent finding that Danny had CTE stage 2 gave the girls and I clarity about his condition and the choices he made. Strangely, it almost provided us with relief—relief that he had no choice over his action because of his brain injury.
When I hear that someone who played significant levels of contact sport has taken their life, my mind instantly goes to CTE as well as the pain and suffering the sufferer and the family must have gone through and are still going through. It triggers so many emotions, namely anger, that someone else must go through what Danny and the girls and I went through.
Mr Peter 'Wombat' Maguire—Australian football
3.34Mr Peter 'Wombat' Maguire submitted that, in April 1994, he sustained multiple concussions within one game of AFL that triggered a 'life-changing tidal wave of medical events'. He said that, even as recently as a few weeks prior to his giving evidence to the inquiry, certain health practitioners did not believe his account of how medications prescribed to him were adversely affecting him. Mr Maguire also said:
There is no doubt that concussions cause psychological conditions such as sleep disturbance, depression, anxiety. Yet because many times over neurologists cannot see it, like in my case, on an MRI or CT scan, I then get referred to psychiatrists, whose medications, instead of helping symptoms, in fact lead to making symptoms much worse, including suicidal tendencies.
This is not just an athlete issue, despite the crux of this hearing being about concussion in sport alone. This also affects our veterans, domestic violence victims, as well as car accident victims, where more times than not explanations for symptoms are put under the PTSD banner and medicated away, leading to many suicides purely because the sufferer simply is not heard as a sufferer.
Ms Lydia Pingel—Australian football
3.35In her evidence to the inquiry, Miss Lydia Pingel, a former female Australian footballer who played over a three-year period in Queensland’s premier QAFLW and division 1 leagues said the following:
I'm a 30-year-old ex-AFL-player, now medically retired from contact sports and pretty much all sports, due to concussions I received whilst playing. I had seven in three years, and it's been two years since my last concussion.
Since then, although I physically look normal, I've got a cognitive impairment and I suffer from persistent post-concussion syndrome, which basically entails the symptoms that you have 24 to 48 hours after a concussion; I suffer them every day in various forms and in various intensities. That hasn't stopped for over two years now.
Subsequently, my life has completely changed due to that. There is no rehab. There are no specific treatments. There is nothing specific, essentially, to what I'm going through or specific to concussion in general. It's a very grey and unknown space. It's a bit of a 'figure it out on your own' kind of thing in a way. There's not a lot of direction there for people like me to follow and go through with.
Mr Joseph Didulica—Soccer
3.36Mr Joseph Didulica, a former goalkeeper who played in Australia’s national soccer league and for various clubs across Europe, shared his story with the inquiry. Mr Didulica, who grew up in Geelong in Victoria, started playing soccer in his youth and believes he experienced his first concussion when he was five or six years old:
Through the late teenage years these concussions would become a little bit more prevalent. As a goalkeeper I would get knocked in the head and I would play through the game. It wasn't until one game when I was a teenager and I got smashed in the head, I was in the showers after everyone left and I was still in there not knowing where I was. All of a sudden my mum and dad came down and asked me 'What's going on?' I said, 'I just don't know where I am, mum and dad.' And they got me up.
In 2006 … I was uppercut with a ball during a game. I was laying there unconscious. They've taken me off. My head's wobbling. In the change rooms I wake up talking German. I was in Holland, right? So they said: 'Okay, you're up. Take a shower and go home.' My wife came. I didn't know I was married, so I was, 'This strange lady is driving me home.' I didn't know I had a daughter. I went home and I didn't play for two years after that. I obviously had a whiplash and then my life turned into what it is today.
Since that day light affects me, noise affects me, long days affect me. My nervous system's shot. I've had bad headaches and migraines every day since that day. I'm tense. Every morning I wake up and that's what wakes me up, the pounding of my head. How I get through the day is through meditation. I'm now on medicinal marijuana, for whatever that's worth. That's probably the only thing that helps me stay sane, I think. I'm not sure of the long-term consequences of that, but I'm living day to day, week to week. Also, the mental blanks that you have and the brain fog, which is constant as well—as long as the day goes that's crippling.
The position of the Australian Sports Commission, the Australian Institute of Sport, and the Department of Health and Aged Care
3.37As noted in chapter 1, the Australian Sports Commission (ASC) is the Australian Government agency responsible for supporting and investing in sport across all levels and it plays a leadership role in guiding sporting organisations, and the sport sector more broadly, in relation to a range of issues impacting upon them. Further, the Australian Institute of Sport (AIS) is the high performance arm of the ASC.
3.38In its submission to the inquiry, the ASC acknowledged that there is evidence that some individuals who suffer repeated head trauma are susceptible to long‑term degenerative brain disease and that there is an association between a history of repeated concussions and cognitive deficits later in life. However, it also noted:
… there is currently a lack of high-quality evidence indicating the degree of association between RHT [repeated head trauma] and concussion with CTE‑NC [Chronic Traumatic Encephalopathy Neuropathological Change].
3.39The ASC submitted that most research data on CTE was obtained from sport brain bank studies, and that those individuals who donate their brain for these studies almost 'universally' have pre-existing clinical symptoms of degenerative brain disease, resulting in a skewed representation in donors which makes it difficult to apply the findings more broadly to the general population.
3.40The ASC also noted that clinical data obtained from sport bank studies also relied on retrospective interviews with athletes, and their relatives, for information on playing time, repeated head trauma exposure, symptom patterns, mental health issues, and substance abuse. It concluded that '[r]ecall bias is highly likely to affect the reliability of such information'.
3.41The ASC argued that the weakness with current research needs to be addressed with appropriately structured, prospective research projects which attempt to control for confounding variables, such as mental health, drug and alcohol use, genetic predisposition, and education, and which includes control groups that have not been exposed to repeated head trauma.
3.42At a public hearing of the inquiry, Dr David Hughes, Chief Medical Officer of the AIS recognised the link between repeated head trauma and CTE, but stated CTE is not an inevitable consequence of concussion. Dr Hughes also cautioned that the strength of the association, and extent of the role of other factors will only be understood with further, robust research:
I want to clarify, yet again, that the AIS is not dismissing or trivialising CTE, but perspective and scientific reality are important. In summary, CTE is not an inevitable consequence of concussion. Yes, there is a link between repeated head trauma and the development of CTE. However, the strength of that link and the manner in which moderating factors which others have alluded to, such as alcohol abuse, recreational drug use, education exposure, past history of psychiatric illness and genetic factors interact with repeated head trauma will only be discovered by appropriately structured, prospective, longitudinal studies that include a control group of individuals who have not been exposed to repeated head trauma...
3.43Dr Hughes also told the committee that the AIS is concerned about the acute and long-term effects of concussion and is committed to optimising safety in sport, but also urged for ‘balance and perspective’ in the reporting of CTE:
… the AIS is concerned about the acute and long-term effects of concussion and is committed to optimising safety in sport. CTE is a histopathological diagnosis associated with repeated head trauma.
AIS is also aware, however, of an inaccurate perception in the community of the prevalence of CTE among athletes who have been exposed to concussion. To be clear, this does not diminish the AIS's concern about CTE or its commitment to optimising safety. The truth, however … is that, for the vast majority of individuals who experience concussion, the experience is transient, short lived and results in no long-term health consequences. In the majority of cases, with or without medical intervention, recovery occurs in about 10 to 14 days in adults and about four weeks in children and adolescents.
Conservative estimates suggest at least 100,000 sport related concussions occur in Australia each year. That equates to at least three million cases over the past three decades. At the last report from the Australian Sports Brain Bank, published in 2022, there had 12 cases of CTE confirmed in retired Australian athletes.
… the AIS urges balance and perspective in reporting this condition. Public perception is that CTE is a common consequence of concussion in sport. It is not.
3.44When asked about the correlation between concussion and repeated head trauma with CTE, the Secretary of the Department of Health and Aged Care, Professor Brendan Murphy AC, said:
… this is still an area of some controversy and where there needs to be a lot more evidence and a properly accumulated database. Beyond that, I can't think of much else I can add.
The position of national sporting organisations
3.45In its submission to the inquiry, the AFL acknowledged that there is an association between head trauma and neurodegenerative disease, including CTE-NC. The AFL also noted that it supports and adopts the recent statement on CTE-NC by the National Institutes of Health, part of the United States Department of Health and Human Services:
Chronic traumatic encephalopathy (CTE) is a delayed neurodegenerative disorder that was initially identified in postmortem [sic] brains, and research-to-date suggests, is caused in part by repeated traumatic brain injuries.
3.46The AFL endorsed the view of the AIS and other bodies that further exploration of the potential link between concussion and/or repeated head impacts and CTE-NC is needed through well-designed prospective epidemiological studies that take into account the potential confounding variables.
3.47When asked about the causal relationship between concussion and CTE, DrSharon Flahive, Chief Medical Officer of the National Rugby League (NRL) told the committee:
There is an association with repeated head trauma. We don't know how strong this association is and we don't know what type of head trauma this involves. Whether there's a certain type of concussion or whether it is a dose effect, the medical evidence is not clear. We also don't know, with regard to the diagnosis of CTE, who is susceptible, what part the modifying factors take and what the prevalence is; but we do accept there is an association.
3.48In answers to questions on notice, Rugby Australia stated that:
Rugby Australia acknowledges that the current science recognises an association between traumatic brain injuries and long-term neurodegenerative changes. The science around what this association is and how it relates to concussion is evolving. Regardless, Rugby Australia’s approach to concussion is comprehensive and conservative and will continue to evolve as the science evolves.
3.49Representing Football Australia, Chief Operating Officer and Deputy General Secretary Mr Mark Falvo told the committee:
I think that there is certainly some research that links repeated head trauma to CTE. That's the reason we take this issue very seriously and have been doing the work that we've been doing for some time now.
3.50At a public hearing of the inquiry, Dr John Orchard, Chief Medical Officer of Cricket Australia told the committee he accepts there is a link between repetitive head trauma and CTE. However, Cricket Australia’s submission to the inquiry noted:
There is no cricket specific data on the long-term impacts of concussion and repeated head trauma. CA [Cricket Australia] has been collecting accurate data on all head impacts from the 300 professional elite players each year for almost a decade, as well as data from elite pathway players. This data will form the foundation for ongoing research to better understand the medium and long-term impacts of cricket related head trauma and concussion, as current players transition out of the professional game.
The need for immediate action and precautionary measures
3.51Several inquiry participants outlined the need for immediate and precautionary action, despite the lack of settled evidence. For example, Dr Reidar Lystad submitted that absolute resolution or 100 per cent certainty of a causal relationship between repetitive head trauma and neurodegenerative diseases, isnot, and cannot, be the minimum standard for public health action.
3.52Dr Adrian Cohen, Chief Executive Officer of Headsafe, expressed similar sentiments, stating ‘if we wait to act until the evidence is perfect and complete, we will never act’.
3.53Lawyer and legal academic, Dr Annette Greenhow, an expert in the regulation of sport-related concussion in Australia, noted that precautionary-based approaches should be adopted whilst the science continues to evolve:
The scientific discussion as to the extent of the causal relationship will likely continue for many years into the future. In the meantime, a precautionary-based approach, developed in consultation with key stakeholders and reflective of the nuances across various sports settings, can guide decision-makers.
3.54The RACGP similarly suggested precautionary measures. It noted that whilst there is not enough evidence to determine the long-term impacts of concussion and repeated head trauma, it is important that contact sports are made as safe as possible to those currently participating, so that they are protected from any potential known or unknown harms of concussions or repeated head impacts.
3.55When asked whether sports should wait until more research is completed before acting on these issues, Professor Terry Slevin, Chief Executive of the Public Health Association of Australia, Professor Mark Morgan of the RACGP and Professor Vicki Anderson of the Murdoch Children’s Research Institute, all agreed that sporting organisations should act now.
3.56Mrs Anita Frawley also implored sporting bodies to act now given an association between contact sport and CTE has been established:
I know that we cannot sit waiting for the causal results from longitudinal studies when we already know there is an association between contact sport and CTE. The sporting bodies need to act now. Now that we know we need to act, to know and not to do is to not really know at all.
Current research initiatives and funding
3.57The committee heard that concussion research in Australia has been funded through a variety of mechanisms, including by governments, philanthropic and academic partnerships, as well as through major sporting organisations.
3.58Inquiry participants highlighted a number of research initiatives that are either currently underway or are expected to commence in the near future. A selection of these are discussed below.
Government initiatives and funding
3.59In Australia, funding for medical research is available via the NHMRC grant system and the Medical Research Future Fund (MRFF). The ASC noted that both these entities are currently funding long-term studies of mild traumatic brain injury and concussion, and that funding approval provided by these bodies is based on a researcher’s track record and the strength of any proposed study.
Medical Research Future Fund and the Traumatic Brain Injury Mission
3.60The MRFF provides grants to support health and medical research, improve health outcomes, quality of life, and health system sustainability. Through this fund, $50 million has been committed over a decade to the Traumatic Brain Injury Mission (TBI Mission) to support research designed to improve the lives of Australians who experience mild, moderate, and severe traumatic brain injuries.
3.61The goal of the TBI Mission is to better predict recovery outcomes after a traumatic brain injury, identify the most effective care and treatments, and reduce barriers to support people to live their best possible life after incurring such an injury.
3.62According to the Department of Health and Aged Care, the MRFF, primarily through the TBI Mission, has invested $7.5 million across six grants with a focus on concussion research since 2015.
3.63Professor Melinda Fitzgerald, Chair of the Expert Working Group of the TBIMission, told the committee that a road map and implementation plan for the Mission have been developed and noted that whilst its research is underway, it will take some time due to the nature of the research, which involves the collection of data and monitoring of people over a long period of time.
Australian Sports Commission and the Australian Institute of Sport initiatives
3.64Through funding provided by the Australian Government, the AIS is involved in concussion and long-term brain health research. It has also obtained a grant from the International Olympic Committee (IOC) to fund concussion research. The ASC submitted that one of the significant limitations of existing and past research is the lack of studies comparing findings between retired athletes who have not been exposed to repeated head trauma to those who have.
3.65Given this, in 2021 the Government provided an additional $340 000 for the ASC to deliver the Concussion and Brain Health Project 2021–24, with the aim of improving the understanding of, and evidence base for, the relationship between sports-related concussion and long-term brain health. This funding comprised two components:
$105 000 to update the 'Concussion in Sport Australia Position Statement' and associated education resources—with a focus on the recent scientific evidence regarding the links between sports-related concussions and long‑term brain health; and
$235 000 for the implementation of the Retired Elite Level Athletes’ Brain Health Research Program (Brain Health Research Program), aimed at addressing current gaps in research—including research into the brain health of retired elite level men and women collision and non-collision sport athletes.
3.66The department noted that the Brain Health Research Program supports ongoing collaborations with the University of Newcastle and the University of Canberra to implement the retired elite level athlete brain health survey and to examine the brain health of retired elite level men and women from collision and non-collision sports. The department submitted that the project involves psychological tests, cognitive tests, somatosensory assessments, and multi‑modal experimental brain imaging.
3.67The Chief Medical Officer of the AIS, Dr David Hughes, highlighted the importance of longitudinal studies:
The only way that you'll be able to thread out that complex relationship between repeated head trauma and those modifying factors [such as alcohol abuse, recreational drug use, and a past history of psychiatric illness] is to undertake a longitudinal prospective study. The one that we are involved with at the University of Newcastle and the University of Sydney has been running, I think, since 2012, so for 10 years, and there will be follow-ups.
3.68Dr Hughes also indicated that the AIS had recently secured another research grant from the IOC to introduce a 'female arm' of research into the ongoing study as it was agreed that there was a lack of evidence in relation to females in sport.
Academic and Australian-based brain bank research
3.69The committee is aware that a number of academics and researchers, both domestically and internationally, are conducting a wide variety of studies exploring issues relating to sport-related concussion and repeated head trauma.
3.70The committee is also aware of the operation of various sports ‘brain banks’ in Australia which are undertaking research using donated brain specimens.
Australian Sports Brain Bank
3.71The Australian Sports Brain Bank (ASBB) was established in 2018 by the Neuropathology Department at Royal Prince Alfred Hospital, Sydney, in partnership with the Brain and Mind Centre at the University of Sydney and the Concussion Legacy Foundation in the United States of America.
3.72The ASBB’s mission is to use expert diagnostic neuropathology, coupled with research, to understand CTE and other brain pathology that is associated with repetitive head injuries. Since commencing, it has received more than 600 donation pledges from amateur and professional sportspeople.
3.73In June 2022, researchers at the ASBB published an article titled Chronic Traumatic Encephalopathy as a Preventable Environmental Disease. This article noted that there was already a large body of evidence strongly linking repeated head trauma to subsequent risks of neurodegenerative diseases later in life, and that despite this evidence, there remained significant 'scepticism and confusion', particularly around CTE and its relationship to sports-related repeated head injuries.
3.74The authors considered that the debate around CTE and repeated head injuries was 'reminiscent of controversies on tobacco use and lung cancer risk that were fostered by tobacco companies intending to protect their business'. In the article’s concluding remarks, the four authors wrote:
CTE is a neurodegenerative pathology closely associated with a history of repetitive traumatic brain injury. Currently CTE can only be diagnosed after death, but the living signs and symptoms of those harboring CTE are indicative of RHI-induced neuropsychological decline.
Dismissal or downplaying of the evidence for the long-term consequences of RHI in sport, or elsewhere, does nothing to advance our understanding of either CTE, or neurodegeneration more broadly. The costs incurred by ignoring, downplaying, or denying CTE are likely to be far greater than the costs of acknowledging, researching, and acting on this preventable environmental disease as a matter of urgency.
Sydney Brain Bank
3.75The Sydney Brain Bank (SBB) is a specialised research facility established to collect brain and spinal cord tissue from donors with the aim of promoting research into disorders that affect the central nervous system. The SBB is housed at, and supported by, Neuroscience Research Australia.
3.76The SBB has approval to collect, characterise, and store human brain and spinal cord tissue specimens for research purposes. With the assistance of an independent scientific review committee, it assesses research proposals to use the tissue and distribute the specimens to domestic and international researchers with the goal of advancing knowledge of human brain and spinal cord disorders. The SBB focuses on collecting the brain and spinal cord from both healthy aged donors and those with neurodegenerative conditions.
3.77A research article published in 2022 regarding the prevalence of CTE in the SBB found the following:
Our study shows a very low rate of chronic traumatic encephalopathy neuropathological change in brains with or without neurodegenerative disease from the Sydney Brain Bank. Our evidence suggests that isolated traumatic brain injury in the general population is unlikely to cause chronic traumatic encephalopathy neuropathologic change but may be associated with increased brain ageing.
3.78The committee is also aware of the Australian CTE Biobank based which was established at Macquarie University in 2022.
Concerns regarding studies from sports brain banks
3.79The Chief Medical Officer of the AIS, Dr David Hughes, raised a concern regarding methodological flaws—specifically, ascertainment bias—affecting many of the sports brain bank studies being undertaken around the world.
The overwhelming majority of people donating their brains to sports brain banks are those with clinical symptoms of poor brain health in life. This skewed recruitment leads to an elevated level of CTE detection among that donor cohort.
It is important … to understand that there are different types of brain donation banks. There are sport brain donation banks, which we've heard a lot about and which are affected by ascertainment bias, and there are non‑sport brain donation banks, like the Sydney Brain Bank. There are stark differences in the rates of CTE detected in sport brain banks versus non-sport brain banks. Sport brain banks frequently quote that CTE rates among their donor cohort are between 50 per cent and 99 per cent. Studies from non-sport brain banks in Australia, the USA and Europe have demonstrated CTE rates of 0.79 per cent, 0.6 per cent and zero per cent respectively.
Given the high proportion of the Australian population that has played contact or collision sport for five years or more, these results suggest that CTE affects a small proportion of those in contact or collision sports.
Sports code funded research
3.80Evidence to the inquiry highlighted that major contact sporting codes in Australia are conducting and/or funding research initiatives in relation to sport‑related concussion and repeated head trauma.
3.81The AFL outlined its concussion and head trauma research program in its submission to the inquiry and noted that the AFL Commission recently approved funding of up to $25 million over the next decade to support the AFL Brain Health Initiative—a longitudinal brain health research program that ‘will track the brain health of players’ from point of entry into the AFL’s talent pathway competitions through to post AFL and AFLW careers. On this initiative, MrAndrew Dillon from the AFL told the inquiry:
This program, which will also deliver regular controlled cross-sectional analysis, will deliver significant insights into the impacts of concussion over the playing careers and broader lifespan of players to better inform concussion and head-trauma management policies into the future.
We frequently collaborate and share data with other sports, internationally and domestically, and we will continue to seek to collaborate with research and academic teams both nationally and internationally to understand more about concussion and its impact on Australian football players.
3.82The NRL submitted that it is investing in research on sport-related concussion and player safety, including by:
Partnering with academic institutions, such as universities and research organisations, to fund and conduct research on sports-related concussion and player safety.
Supporting independent research projects and initiatives aimed at improving the understanding of concussion and player safety in rugby league.
The NRL provides funding for research grants to support research projects aimed at improving understanding of concussion and player safety in rugby league.
3.83Rugby Australia explained that it supports and collaborates with universities on a number of studies including:
A collaboration with the University of Canberra to look at the efficacy of instrumented mouthguards as an objective measure of potential brain injury.
Studies with Edith Cowan University and the University of Canberra that explore attitudes of rugby participants to inform Rugby Australia and assist it to tailor educational approaches.
A Queensland University of Technology study using cameras and artificial intelligence to determine whether there is a correlation between tackle height and reported concussions and whether a change of tackle height may affect the rate of concussion.
A collaboration with the Queensland Brain Institute investigating objective measures of brain injury following concussion in school aged male rugby players, including brain scans, and biomarkers.
The need for further research
3.84Several inquiry participants called for further research into various aspects of sport-related concussion and repeated head trauma.
3.85The Florey Institute of Neuroscience and Mental Health (The Florey) noted there is still much to learn about concussion in sports, and recognised there is a clear and pressing need for better evidence to inform management of concussion and improved concussion prevention in both community sport and professional sport. The Florey elaborated on what is needed in future research:
It is our view that a holistic research program using a range of techniques and tapping into the expertise of a variety of clinicians and scientists is required. A longitudinal program of research using these advanced imaging techniques associated with cognitive assessment and outcomes is an important next step – and this must be properly resourced. Research into concussion needs consistent funding to progress through the pilot phase and into sizeable studies, including longitudinal follow-up, that can have valuable and enduring impacts for people engaging in both community and professional sports.
3.86The RACGP submitted that good quality evidence on the long-term impacts of concussion and repeated head trauma will help determine the most appropriate treatment and management strategies and recommended that ‘significant funding’ is allocated for clinical research into the long-term impacts of concussion and repeated head trauma in contact sports.
3.87Dr Doug King PhD noted that further studies are needed to establish whether there is a direct causal link between concussion and CTE, the age the nervous system is most susceptible to the effects of concussion, and whether proper management of concussion can reduce late-life neurodegenerative dementias.
3.88Orygen, a research and knowledge translation organisation focusing on mental ill-health in young people, argued that the current research focus on elite athletes needs to be balanced with greater research with semi-professional and community participants. It also suggested that increased research and data collection on the prevalence, monitoring and reporting of concussion and long-term impacts of concussion and repeated head trauma is also required, at all levels of sport.
3.89In its Concussion and Brain Health Position Statement 2023, the AIS noted that knowledge regarding the effects of repeated head trauma and concussion continues to evolve and that many questions remain unanswered. It submitted that well-structured scientific investigations are needed to address these knowledge gaps and encouraged co-design research models that incorporate the voices of athletes, as well as those of under-represented communities. It suggested that future research should be targeted to answer the following questions:
What is the prevalence of CTE-NC in female, male, and para-sport athletes?
What is the strength of the association between RHT, concussion, and development of CTE-NC?
What is the strength of association between histopathological changes of CTE-NC and the clinical syndrome of Traumatic Encephalopathy Syndrome (TES)?
Which athletes are susceptible to development of CTE-NC, and why?
What role do modifying factors play in susceptibility to the development of CTE-NC?
What is the natural history of CTE-NC? Is it an inexorably progressive disease, similar to neurodegenerative diseases such as Alzheimer’s disease?
Are female athletes more susceptible to CTE-NC than males, for a set dose of RHT exposure?
Are para-athletes more susceptible to CTE-NC than able-bodied athletes, for a set dose of RHT exposure?
Are specific cultural cohorts more susceptible to CTE-NC than athletes from Anglo-Saxon background, for a set dose of RHT exposure?
What is the sex-based differences in risk of and clinical picture of RHT and concussion in sport?
What is the prevalence of RHT and concussion in First Nations Communities and culturally and linguistically diverse populations?
What changes can be made to better capture nationwide data on RHT and concussion in sport?
What sport-specific measures are efficacious in preventing RHT and concussion?
What is the impact of RHT and concussion on developing brains of youth athletes and the long-term impact?
What is the long term mental and physical health in those exposed to RHT and concussion?
What is the effect of more conservative return to sport protocols on the acute and long term sequalae of concussion?
What are the most effective therapeutic interventions for recovery from episodes of concussion?
What rule/regulation modifications could be effective in reducing incidence of RHT in individual sports?
3.90The AIS submitted that these unanswered questions present an 'enormous challenge' to the medical and scientific communities, and that prospective, longitudinal, clinicopathological studies could help identify possible early clinical features, progression, and potentially help with interventions.
Head trauma and women in sport
3.91In recent years, a number of sports have established professional female leagues, such as the Australian Football League Women’s (AFLW) and the National Rugby League Women’s (NRLW). Despite this increase in elite women’s sports, there is currently both a lack of research on how the female brain responds to concussion, as well as a lack of research investigating the long‑term brain health of female athletes. The AIS considered that the role of biological differences in women, and any associated effect on predisposition to traumatic encephalopathy syndrome, CTE, and other neurodegenerative diseases, remains unclear.
3.92In her evidence to the inquiry, a former elite-level rugby union player, MsKirbySefo, said the following:
My hope for future conversations and decisions being made around concussion and repeated head trauma is that it is female-centric to the reality of women in sport. We're built differently, we're less researched, we're—at times—under-prioritised and marginalised. We are the lower income earners and we're also the partners or the mothers who carry an emotional and mental load far greater than any other member of our households. We need frameworks in place that support education to head trauma and concussion, financial subsidies, medical advice, mental health and wellbeing assistance, family support and guidance, and an overall general advocacy for women.
3.93In her evidence to the inquiry, Ms Catherine de Hollander, a PhD candidate examining the effects of impacts in female team collision sports, said:
Women tend to have higher incidences of concussion, take longer to recover and experience more severe symptoms compared to males. But, despite these findings, women have only made up 19.9 per cent of the overall sample in concussion studies. This is concerning, as female participation in collision sports in Australia is increasing.
3.94In his submission to the inquiry, historian at the University of Queensland’s School of Human Movement and Nutrition Sciences, Dr Stephen Townsend urged cautioned about the assumptions made regarding women’s susceptibility to sports-related concussion and noted further research in this space is needed:
I urge caution in the conduct and interpretation of SRC [sports-related concussion] research on women’s contact sports. There is concern about the apparently heightened frequency and severity of mTBI [mild traumatic brain injury] in women. The unique causes and effects of mTBI for women in contact sport are obviously worthy of scientific research but we must be wary of hastily attributing this solely to physiology. There may be biomechanical and hormonal factors which increase mTBI risk for women … However, it is likely that social, cultural, and financial inequalities also play a role.
3.95When asked about the current gaps in evidence, neuroscientist ProfessorAlanPearce called for more research into the effects of sport-related concussion on women, as well as more diversity in general in future research in this space, including looking at the effects on people of colour, and First Nations populations.
Head trauma and children in sport
3.96During the inquiry, the Chief Medical Officer of the AIS, Dr David Hughes was asked whether he thought exposure to concussion for children at a young age could have long-term neurological consequences. He said:
I don't think there's any evidence for that at this stage, but we all operate with an abundance of caution. As previous researchers have pointed out in this inquiry, in the age group 12 and under, children present commonly, particularly to the paediatric emergency departments, but less than 25 per cent of those concussions are related to organised sport.
So, if you're going to stop children under the age of 12 from engaging in team sports where they may be susceptible to concussion, you've also got to stop them from climbing trees, riding bikes, skiing, riding horses and riding skateboards.
3.97Professor Karen Barlow from the Child Health Research Centre at the University of Queensland suggested that a higher proportion of concussions in children occur during sport—mostly in contact sports—and that more research was required. In her evidence to the inquiry, she said:
I see my role here today is to … highlight the difficulties that children have with concussion, as 70 per cent of concussions occur during sport, most of them being contact sports. This is during a time of rapid brain development and psychosocial development. We really need to understand more.
I've done some research showing that, even though children no longer have symptoms after a concussion, the brain is still recovering. That is really important, because most of our guidelines about returning children to play are around being symptom free. We know that, by around two years, the brain is back to normal, but we still do not know how long somebody who is asymptomatic takes to return to normal brain function.
3.98The Murdoch Children’s Research Institute also highlighted the need for more evidence relating to child concussion and suggested extending available research evidence ‘by conducting multisite, longitudinal studies that map children’s recovery from concussion across into adulthood’.
Further research into the social aspects of concussion
3.99Noting that medical research was vital to developing a better understanding of mild traumatic brain injury, and that researchers needed more funding and opportunities to study the pathophysiology, diagnostics, and treatment of these injuries, historian Dr Townsend from the University of Queensland submitted that science alone cannot solve this issue and that research into the social aspect of concussion is also required:
Sports concussion is fundamentally a social problem because it's the result of choices. We can sustain an MTBI from a variety of circumstances, whether vehicle crashes, workplace incidents, slips and falls or assaults, and most of these circumstances would be classified as accidents. We cannot classify concussion in sport as an accident. Australians choose to play games which are designed to produce brain injuries. We choose to enact risky and self‑sacrificial behaviours within those games. And we choose to downplay or conceal brain injuries when they occur.
Concerns regarding research integrity and conflicts of interest
3.100Several inquiry participants raised concerns about potential conflict of interests and other issues which can arise when sporting codes directly themselves fund research regarding the effects of sport-related concussion.
3.101Dr Stephen Townsend explained there are legitimate concerns about the independence of concussion research financed by sporting organisations:
The governing bodies of contact sports see the concussion crisis as an existential threat, and they [are] desperate for research which suggests that SRC [sport-related concussion] is less common or less dangerous than is currently believed, or that their efforts to reduce SRC are working.
3.102Dr Townsend noted that whilst the scientific method and bioethical principles are meant to ward against research bias, mechanisms which any funding body can employ to manipulate findings still remain. He advised that such practices include recruiting partial researchers, demanding favourable inclusion or exclusion criteria for study participants, and suppressing the dissemination of unfavourable data.
3.103Dr Townsend made no specific suggestion that any contact sporting codes in Australia have engaged in these practices, but noted that these organisations have the tools and motivation to do so. He acknowledged that governing bodies of Australia’s contact sports codes have every right to commission scientific research into sports concussion and should be encouraged to do so, but that the Australian Government must not assume that league-funded research projects are sufficient or independent.
3.104Dr Townsend recommended that the Australian Government fund truly independent research through the NHMRC, MRFF, and Australian Research Council (ARC).
3.105Similarly, Dr Reidar Lystad expressed concern about concussion research being driven purely by the sports sector due to conflicts of interest. He told the committee there have been ‘several incidents’ of interference from sports governing bodies in research projects they have financed, both in Australia and internationally, and urged caution going forward. Expressing similar sentiments to DrTownsend, Dr Lystad also suggested that government should take a more active role in contributing to concussion research.
3.106Dr Doug King also raised concerns about research integrity and academic freedom:
Although all sports associations are directly involved in repeated head impacts and concussions and a few financially healthy sports organisations do provide funding for research, there are concerns regarding how they distribute this funding and the requirements attached with this funding. Some organisations require that the research findings are provided to them before any results are publicly available or openly discussed. This may involve the removal of any ‘emotionally charged’ or ‘detrimental terms that may not be suitable for the promotion of the game in a positive light. The ability to have academic freedom and the conducting of research rigor is there for limited and undermined by the actions of these organisations.
3.107Dr Alexandra Veuthey contended that independence and transparency issues are recurrent in this space, and have potentially lead to biased results and delays in the improvement of player safety. Dr Veuthey proposed that Australian sports governing bodies must ensure that internal research is free of perceived bias and be complemented with more independent medical and technological studies.
3.108Dr Veuthey added that sports governing bodies should keep in mind that while research should not be kept secret, it should also not be utilised for self‑promotion or simply to repair reputational damage.
3.109Internationally, the issue of research independence was highlighted in the UKHouse of Commons Concussion in Sport Report. Participants in that inquiry raised concerns that research funding was mainly from the sports themselves and that this allowed for the potential for findings to exhibit 'confirmation bias', where the results reflected what a commissioning organisation wanted to hear. Similar concerns regarding conflicts of interest and biased funding sources were raised in relation to the Concussion in Sport Group (CISG), which issues the consensus statement on concussion in sport and is funded by sport.
3.110Submitters to this inquiry also raised concerns about the integrity of the CISG. For example, Dr Lystad explained:
Concussion guidelines, policies, and protocols are often relying heavily on the influential Concussion in Sport Group (CISG) consensus statement. There are several concerns regarding the methodology and transparency of the most recent CISG consensus statement [McCrory et al, 2017].
The degree of selection bias for the CISG expert panel is unknown because the selection criteria are opaque, and it is unclear how many experts might have satisfied the selection criteria but were not invited. It is noteworthy that none of the world-leading experts on CTE neuropathology (i.e., Professor Ann McKee, Professor Willie Stewart, and Professor Michael Buckland) were members of the 2016 CISG expert panel.
There are concerns about conflicts of interest among the CISG expert panel members. The 2016 CISG expert panel comprised 36 individuals, of whom 32 had significant known conflicts of interest.
The level of (dis)agreement among the CISG expert panel members is not transparent. For instance, at least two 2016 CISG expert panel members (i.e., Dr Robert Cantu and Dr Charles Tator) have criticised the 2016 CISG consensus statement on chronic traumatic encephalopathy (CTE), yet no dissenting or minority opinion have been recorded or published in the 2016 CISG consensus statement.
3.111Dr Veuthey also flagged concerns about the independence of the CISG and its guidelines:
The Concussion in Sport Group (CISG)’s guidelines, drafted by medical experts active in the sports industry, are considered to be preeminent in Australia and internationally.
However, these guidelines must be viewed with caution, since they are designed by experts on behalf of sports governing bodies, and raise problems in terms of independence. This issue is particularly sensitive when it comes to the link between head injuries and long-term medical risks, which the CISG’s guidelines, unlike other guidelines, do not acknowledge.
3.112In its submission to the inquiry, the ASC noted that critics have accused sporting bodies of conducting a 'big tobacco' style manipulation of research outcomes. On this issue, the ASC submitted that:
In considering provision of funding for research into concussion, sport organisations often find themselves in a 'damned if they do and damned if they don't' situation. Funding of concussion research is inherently controversial. While failure to fund scientific research can lead to allegations of disinterest or failure of duty of care, provision of research funding can be interpreted as undermining the essential neutrality of scientific investigation and thus unduly influencing the evidence base.
3.113Dr Paul Bloomfield, sports and exercise physician and former NRL Chief Medical Officer, who represented Sports Medicine Australia at a public hearing of the inquiry also flagged the potential conflict of interest which can arise when commercial bodies finance research in this space. He said:
Another group that are funding a fair bit of research are commercial bodies with commercial equipment, and obviously there's a conflict there with regard to selling products, so the science needs to be good. That's what I'd also reinforce… But that reinforces the need for more government funding and more government led research.
Financing future research
3.114There were mixed views amongst submitters and witnesses about how further research regarding sport-related concussion should be financed.
3.115As noted above, researchers including Dr Townsend and Dr Lystad highlighted that concussion research should not be solely funded by professional sporting bodies, and suggested government play a more active role in funding independent research. Dr Townsend specifically recommended that the Australian Government finance research through the NHMRC, MRFF, andARC.
3.116Other submitters, including the Public Health Association of Australia, maintained that sporting bodies have a responsibility to support the financing of research given they make profits in circumstances where athletes may incur concussions. The Public Health Association of Australia emphasised that research must still be conducted independently from the sporting sector:
… the research must be conducted at arm’s length from industry and the researchers must be independent from the sporting associations, clubs and codes. Researchers need to be able to provide unbiased findings regarding how to effectively minimise the risk of concussion during play.
3.117Concussion Australia similarly submitted:
Despite the perceived conflict of interest that exists (and perhaps also with respect to certain doctors), our position is that sporting associations and clubs should be involved in financing research due to the profits made in circumstances where athletes and former athletes may suffer from concussion.
3.118Concussion Australia proposed that sporting associations should financially contribute to a ‘communal concussion research fund’ that is administered by the Australian Government.
3.119Griffins Lawyers similarly recommended that a central fund for research into the prevention and management of head and neck injuries in football be established.
3.120Dr Annette Greenhow also supported centrally organised and administered research programs and funding, in order to coordinate the research agenda, deliver high quality research outputs, and maintain research and academic integrity and ethical standards. Dr Greenhow also expressed strong support for financial and in-kind contributions from sports associations and clubs in such research.
3.121With regards to the question of funding proportions, Orygen suggested that research funding should reflect the level of participation in community sports.
3.122The ASC noted that appropriately structured research projects are expensive—particularly so for the long-term prospective studies that are required to gain definitive information about concussion and brain health. Given this, the ASC considered that sporting bodies should be able to contribute to funding health research in sport—so long as the funding structure is such that the sports bodies do not have input into, or influence over, the manner in which the research is conducted or the way that results are presented. It suggested that a multi-modal funding model, incorporating government, sport organisations, and universities, was appropriate—as long as appropriate ethical safeguards were put in place.
Committee view
3.123As discussed in this chapter, the association between repeated head trauma and subsequent brain disease has been examined since the early 1900s and, in more recent times, has been investigated by numerous researchers both domestically and internationally.
3.124There is clear evidence of a causal link between repeated head trauma and concussions and subsequent neurodegenerative diseases such as CTE. While important research questions remain regarding the degree of causation and the nature of long-term impacts, these questions should not be used to undermine the fundamental nature of that link.
3.125The committee thanks the many witnesses who shared powerful personal accounts, both of their experience as athletes, and of the impacts of concussions on their loved ones. Their evidence highlights the human impact of this issue, and the urgency of action from government and sporting organisations.
3.126The committee believes that continuing to explore the causative link between concussion and repeated head trauma and long-term health, including neurological consequences, is a key research priority going forward.
3.127The committee recognises the important role that brain banks play in facilitating and enabling the work of researchers, both domestically and internationally. The committee considers that it is vital that these organisations continue to receive donations and that they are adequately supported to continue their important work. The committee strongly supports any initiative which promotes and encourages people, both athletes and otherwise, to donate their brain to help progress research and eliminate the scourge of neurodegenerative disease.
3.128Whilst the evidence continues to evolve, the committee echoes DrLystad’s point that absolute resolution or 100 per cent certainty of a causal relationship between repetitive head trauma and neurodegenerative diseases, is not and cannot be, the minimum standard for public health action. The committee urges national sporting bodies, community sports clubs and governments alike to act now, and continue to adopt and apply precautionary measures whilst the evidence settles.
3.129The committee acknowledges the surge in research in this space, particularly over the past two decades, but is cognisant that various other gaps in scientific evidence still remain. The committee considers that future research should, at least initially, focus on providing answers to the 18 questions posted by the Australian Institute of Sport in its Concussion and Brain Health Position Statement 2023. This includes specific research into the effects of concussions and repeated head trauma on at‑risk populations, including women, children, and First Nations people.
3.130In terms of research integrity and financing research, the committee supports existing efforts by Australian Government, through the NHRMC and the MRFF, to fund long-term studies of mild traumatic brain injury and concussion. The committee also supports the ASC’s delivery of its Concussion and Brain Health Project 2021–24, which aims to improve the understanding of the relationship between sport‑related concussion and long-term brain health. However, the committee considers that the Australian Government’s research efforts in this space should be extended further and be scrutinised for their effectiveness, transparency and integrity.
3.131The committee also notes the efforts of major sporting bodies to date to support and finance research into various aspects of sport-related concussions and repeated head trauma. The committee, however, is cognisant of the conflicts of interest that exist, real or perceived, with this type of funding model and has considerable reservations regarding the independence of sporting-body sponsored initiatives and the influence that these organisations may have on the research and subsequent results and conclusions.
3.132The committee agrees with evidence suggesting that national contact sport governing bodies should be at least partly responsible for financing future research, given they profit in circumstances where athletes incur concussions. However, the committee is of the strong view that moving forward, government can, and should, play a greater role in supporting and coordinating research, as well as ensuring integrity, independence and transparency of research and grant processes in this space.
3.133Therefore, the committee considers that government should explore mechanisms to facilitate independent, consolidated and coordinated funding frameworks to uphold and protect the integrity of research regarding sport‑related concussion and repeated head trauma into the future.
3.134The committee considers that such comprehensive and independent research is vital to ensure that future sports people and their families do not have to experience the anguish and suffering that current and former generations have faced. The committee sincerely thanks those witnesses that appeared at the committee’s public hearings and spoke about the struggles, challenges, and heartbreaks that they and their loved ones had faced due to sport-related concussions, repeated head trauma and neurodegenerative disease.
3.135The committee recommends that the Australian Government consider establishing independent research pathways, including through a newly created body or through existing bodies, such as the National Health and Medical Research Council, that is dedicated to supporting and coordinating research into the short- and long‑term effects of concussion and repeated head trauma incurred during participation in sport, including Chronic Traumatic Encephalopathy.
The committee envisages that, amongst other things, such pathways would enable well-structured scientific investigations—including prospective, longitudinal clinicopathological studies—to help identify clinical features, progression, and interventions.
3.136The committee recommends that the Australian Government and sporting organisations continue to fund research into the effects of concussion and repeated head trauma on at‑risk cohorts who incur these injuries during their participation in sport.
3.137The committee recommends that the Australian Government consider measures to encourage Australians, in the event of their death, to donate their brain to a brain bank for scientific research into brain health and disease, including Chronic Traumatic Encephalopathy.
3.138The committee recommends that the Australian Government consider a coordinated and consolidated funding framework for ongoing research regarding sport-related concussion and repeated head trauma.
This work should be undertaken in consultation with state and territory governments, sporting organisations, universities, and other scientific research bodies.
The committee recommends the governing bodies of sports associated with concussion and repeated head trauma support their codes to invest in the health and welfare of their players.