‘Building a Better Future Together’ was the theme of the Fifth International Paediatric Brain Injury Society (IPBIS) conference held in Glasgow, Scotland in September, attended by over 400 delegates from 21 countries with 263 abstracts covering a diverse range of topics in paediatric Acquired Brain Injury (pABI).
The conference opened with a traditional Gaelic greeting ‘Madainn mhath” from Tom McMillan (Sct), followed by Liam Dorris (Sct), Conference Chair who welcomed delegates in this the ‘50th anniversary year of the Glasgow Coma Scale’. He reflected on how a small group of pioneering professionals had established the IPBIS and built a dynamic organisation driving change for children and young people with brain injury. Liam thanked Beth Wicks, IPBIS Chair (Eng) for her advocacy and contribution to paediatric brain injury, the conference supporters; Brain Injury Rights Group, CARF International, Digby Brown LLP, Linguistic Resolutions, Serious Injury Law, Sintons LLP, and the exhibitors.
In her last conference as IPBIS Chair, Beth thanked the city of Glasgow and Glasgow Convention Bureau, fellow board members and the MCC team for their help in organising the conference. Nick Reed (Can) succeeds Beth as IPBIS Chair and will host the 6th IPBIS Conference in Calgary, Canada from 28 April-1 May 2026.
“It’s a great pleasure to welcome you all to Glasgow” said Baroness Fraser of Craigmaddie who spoke to delegates in her roles as a member of the Neurological Alliance of Scotland Executive Committee, Chair of the Scottish Government’s National Neurological Advisory Group and also as a member of the House of Lords. She is a staunch advocate for the rights of people with disabilities.
Delegates attended a Civic Reception in Glasgow City Chambers, one of the city’s most prestigious buildings, and celebrated later in the week with a gala dinner held at The Kelvingrove Art Gallery and Museum. IPBIS members at an early stage in their career, and trainees, had a social evening and discussion groups facilitated by those with longer career experience, to encourage and support their interest in pABI.
The conference focussed on the development of innovative treatments, rehabilitation programmes, support mechanisms and ways to improve the lives and potential of young people affected by brain injury. The emphasis on interdisciplinary collaboration echoed throughout the conference as key to maximising the young person’s recovery from ABI, and the importance of learning from, and collaborating with, colleagues across the globe.
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Precision medicine is the way forward
“Paediatric TBI is the most complex injury, to the most complex organ, at the most complex time” said Christopher Giza (USA) and “compared to adults the paediatric brain is subject to distinct neurobiological mechanisms and requires different treatment. For years we have looked for the magic sledgehammer to treat TBI, but what we actually need is precision care.”
Improved characterisation of paediatric TBI using objective biological markers will help develop endophenotypes; an endotype/endophenotype is a constellation of symptoms, signs and biomarkers that identifies a particular TBI diagnosis and its underlying pathophysiology. TBI is not a single diagnosis but a wide range of complex and overlapping biological entities and optimal care and management depends on the specific endotype. Professor Giza said: “The description of mild, moderate, and severe does not tell us about the full spectrum of TBI. So instead, we’re moving towards a different classification system that is linked to the biology of the person which should lead to individualised management, improved prognostication and represent the first steps in moving toward precision care for paediatric TBI. The closer we come to identifying the endotype the better the chance of therapy success.”
Personalised therapy for brain tumours
Steve Clifford (Eng) highlighted the success that is now achievable in treating brain tumours in children. However, improved cure rates have come at a significant cost in terms of deleterious life-long, side-effects for many survivors resulting from current chemotherapy, radiotherapy, and surgical strategies. Speaking from his experience with medulloblastoma, one of the most common children’s brain tumours, Professor Clifford explored the discovery journey that has led from understanding cancer, its late-effects and describing the patient population, to now moving forwards to understanding the biological basis of cancer and development studies looking at single cells and whole genomes.
Understanding the way in which medulloblastomas develop helps to evolve improved therapies, diagnostics, and predictions as to how the disease might behave, and to tailor therapy specifically to each medulloblastoma patient. At the National Diagnostic Centre for Medulloblastoma in Newcastle (Eng) they apply state-of-the-art genetic testing, and this information is used to direct patients to the best trial and treatment. “We need individualised therapy which will deliver more effective and kinder personalised treatments” said Professor Clifford.
Designing interventions – from inspiration to iteration
The process of creating and evaluating innovative, technology-based interventions and solutions can take many approaches and different perspectives. Shannon Scratch (Can) discussed her laboratory’s approach of turning a spark into an idea, and then into a solution for families and children. Professor Scratch said: “We are designing processes to encourage change, and this typically involves using implementation science theories, models, and frameworks. An intervention is designed and built on evidence, assessing, and understanding the needs, local context and agreeing exactly what is required. At the end of the day the work has to be practical and do-able; we build archways not doorways.”
Navigating the school system is difficult and complex and two key projects were discussed; Teach-ABI and R2Play. Teach-ABI is an online professional development module for educators that provides information on ABI and how to support students with ABI in the classroom. R2Play is a multi-domain return-to-play assessment system for youth athletes with concussion. Professor Scratch discussed how both projects have had extensive useability testing to ensure their acceptability.
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Conference round-up
A wealth of rehabilitation programmes were discussed at the conference, but funding continues to hinder implementation. The programmes take many forms even within a country, from residential courses, specialist clinics, transition support, patient and family support groups and online guidance. Whatever the format, delegates agreed that the emphasis is on ensuring that the child and their family voice are at the centre of the rehabilitation pathway, and their lived experiences should inform the development and implementation of all programmes across the care continuum.
Although communication effects are well documented following TBI, cognitive-communication disorders (CCD) are problems with communication that have an underlying cause in a cognitive deficit, rather than a primary language or speech deficit. They are often challenging and difficult for families to describe. CCDs may look different at different developmental stages, be overlooked by community-based providers who are unfamiliar with TBI sequelae, and children may not always receive the support they need which impacts on their long-term functioning and development. Return to school policies are required that will highlight the impact and address CCDs.
Concussion was a key focus for the conference with speakers discussing all aspects from prevention, assessment, management, and programmes guiding the return to school or play. Much work has been in sport-related concussion where recovery is multifaceted with biological sex, social determinants of health, access to healthcare, follow-up adherence and even parental stress all having an effect. Rugby is leading the way across all sports in driving protocol changes aimed at preventing concussions with a focus on changing equipment, policy/law, and training. The severity and recurrence of these concussions needs to be reduced and a ‘Play Smart, Play Safe’ programme has been introduced throughout Canada to re-educate sports coaches and players.
Brain injury in the early years is linked to an increase in criminality and incarceration. In the first Lord Ramsbotham Memorial Lecture, established in recognition of the crucial role he played in promoting criminal justice reforms in support of people with brain injury, the need for training and education in the UK Criminal Justice System (CJS) was discussed. Tom McMillan (Sct) discussed how service development, staff training and improvement in head injury knowledge has had beneficial effects for young people with ABI who are in the CJS.
Measuring responsiveness in children and young people with Disorders of Consciousness (DoC) is challenging. What does meaningful participation or engagement look like in these patients with limited or no external indications of cognitive, behavioural, or emotional outputs? The absence of behaviour does not mean absence of awareness or volition and music-based assessment protocols such as MuSICCA can provide a plausible and acceptable tool for the assessment of consciousness and treatment planning in a way that also involves families.
Building a better future
The factors influencing pABI outcomes including age, sex, health pre-injury, socio-economic status, cognitive and health difficulties all need to be embedded in policies and procedures for supporting children and young adults with this long-term condition.
ABI knowledge and support in schools remains elusive and the conference highlighted the lack of progress globally in bridging the pABI knowledge gap in the education system. A lack of national policies and mandated procedures is prevalent despite many countries having a range of excellent tools and programmes that can be used to help raise awareness of ABI, including concussion, and educate teachers, pupils, and parents. There has been limited progress in the collaboration between schools, medical providers, and families; teamwork and formalised communication is imperative for the support of the child with ABI.
The conference heard that there continue to be advances in pABI treatment and management, but research remains under funded with limited longitudinal studies and few evidence-based assessment tools and interventions. There are also areas that are less understood with limited interventions such as the impact of fatigue and long-term Covid-19. Specific approaches need to be identified to improve assessment and treatment practices including individualised approaches to long-term care and interventions. The gaps in the access to, and utilisation of, services designed to support children and young people with ABI, need to be bridged with improved coordination and communication.
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Jane Gillett Award
The 2024 Jane Gillett Award, named in honour of the founder of the IPBIS, and sponsored by the Brain Injury Rights Group (BIRG), was presented to Joanna Hamilton (Can) by Ron Savage (USA) on behalf of BIRG. Ron said: “IPBIS is delighted to present this Award to Joanna; she has the drive and passion that Jane had and is a worthy recipient”.
Poster Awards
The Poster Awards were presented to:
Zane Grossinger (Can) – ‘Social support and concussion: exploring the experiences of youth facing barriers’
Jennifer Ryan (Can) – ‘Characterising the content of a group exercise programme aimed at improving cognition in paediatric brain tumour survivors’
Oral Scientific Paper Awards
The Oral Scientific Paper Award recipients were:
Pia Wedege (Nor) – ‘Enriching the lives of children with ABI and caregivers: a qualitative study of peer mentorship experiences in a community setting’
Sarah Irani (USA) and Danielle Ranson (USA) – ‘Exploring the impact of biological sex and healthcare accessibility on recovery outcomes in adolescent sport-related concussion’
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A picture is worth a thousand words – Unmasking Brain Injury project
There were amazing face masks available on a rolling screen for the duration of the conference. The masks, produced by over 45 young people from several countries to illustrate how brain injury impacts their life, are part of an IPBIS initiative to enable paediatric involvement in this initiative developed by Hinds Feet Farm, a USA-based rehabilitation provider, called Unmasking Brain Injury. The project promotes awareness of the prevalence of brain injury, gives survivors a voice and the means to educate others about what it is like to live with a brain injury. For further information visit: http://unmaskingbraininjury.org
IPBIS Toolbox Edition 2 now available
The ‘IPBIS Toolbox-the Inventory of Measures and Programmes for the Rehabilitation of Paediatric Brain Injury. Edition 2’, is now available. Many of the tools and programmes that were in the previous edition have been updated and included, together with those tools and programmes that were submitted and accepted in 2023. The IPBIS Toolbox is updated every two years and available as an interactive pdf on the website: https://www.ipbis.org/tools-for-the-rehabilitation-of-children-with-abi
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Diary date
6th Biennial International Paediatric Acquired Brain Injury Conference, Calgary, Canada, 28 April-1 May 2026