Analysis: A new cerebral palsy research programme is looking at how to improve care pathways through prevention, early detection and intervention
By Deirdre Murray, Geraldine Boylan, UCC and Rachel Byrne, Cerebral Palsy Foundation
If you were asked to name the most common physical disability in Ireland, cerebral palsy might not immediately come to mind. It is in fact the most common lifelong physical disability; about 150 children receive a cerebral palsy diagnosis every year and an estimated 3,000 children and young people and 9,500 adults are living with it in Ireland. Despite this prevalence, cerebral palsy has been historically overlooked and underfunded, with delayed diagnoses having a hugely negative impact on those living with it.
Cerebral palsy is a group of disorders that affect a person's ability to move and maintain balance and posture. It is caused by abnormal development or damage to parts of the brain. The severity of cerebral palsy and the extent of the symptoms depend on both the extent of the damage or abnormalities and where they occur in the brain.
From Cerebral Palsy Foundation, Dr Peter Rosenbaum on what is CP
Many individuals with cerebral palsy face considerable and unnecessary challenges in their daily lives, including problems with movement, speech, and other body systems. Early intervention and the right care pathways can make a significant difference in the long-term for people living with cerebral palsy. Indeed, getting access to the right care - at the right time - transforms the quality of life for people with it. The sooner a diagnosis can be fast tracked, the higher the impact of interventions, and the better the outcome.
But many children wait years for a diagnosis, leading to lifelong complications, including severe mobility issues and chronic pain. Although the early injury occurs in the brain, over time this injury and the effect on normal movement leads to abnormalities in the growth and development of both muscles, bones and joints. Many children with CP will require orthopaedic surgery. Unfortunately, in Ireland, for many years children have not had access to the right surgeries, at the right time, resulting in worse outcomes and unnecessary surgeries down the line. These children, and their families, deserve better.
From NHS, Consultant Paediatric Neurologist at Great Ormond Street Hospital Lucinda Carr on the causes, symptoms and treatment of CP
A new ground-breaking five-year research programme - led by the Irish Centre for Maternal and Child Health Research (INFANT) at UCC - is seeking to change that. ELEVATE is being co-funded to the tune of €11.6 million from Science Foundation Ireland (SFI) and the Cerebral Palsy Foundation (CPF), and aims to improve the prevention, detection and treatment of early brain injury and cerebral palsy in Ireland. INFANT is partnering with RCSI University of Medicine and Health Sciences and TCD, as well as all the tertiary-level maternity hospitals across the country to deliver the programme.
The team at INFANT are focussed on 3 key areas to improve care pathways: prevention, early detection, and intervention. Leveraging the latest advancements in AI will help us identify risk factors in pregnancy, labour and the early neonatal period that increase the likelihood of CP. This may help us to prevent CP from occurring in the first place and to reduce its severity when it does occur.
We need your consent to load this rte-player contentWe use rte-player to manage extra content that can set cookies on your device and collect data about your activity. Please review their details and accept them to load the content.Manage Preferences
From RTÉ Radio 1's Today with Claire Byrne, Lily Collison and Rachel Byrne from the Cerebral Palsy Foundation on how new funding aims to make Ireland the next global leader for CP care and research
We will also develop new tools and technologies to improve early detection of CP. This includes assessing motor function (body movements), cognitive function (brain waves, eye movements) and executive function in infants. Consider the fact that newborns routinely have their blood, hearing and heart rate screened. We currently do not have good, easy-to-use monitors for brain function. In the INFANT centre, we want to change that.
Central to our approach is the active involvement of people with cerebral palsy and their families. We know their insights, experiences and perspectives are invaluable to help shape and implement our research studies. We want our research to give a voice to children and families with CP.
A key part of the project is reducing the age of CP diagnosis in Ireland to less than 12 months
As part of the new programme, a national intervention and innovation platform for cerebral palsy research will be established to ensure infants and children with CP in Ireland benefit from the best available evidence-based research. This initiative will focus on implementing effective interventions early in a child's development to improve outcomes.
A significant aspect of the programme involves establishing a cerebral palsy registry in Ireland, which will track the rate of the condition and enable access to evidence-based surveillance pathways, as well as the best research and available clinical trials. Ireland does not currently have a CP registry and so, despite its prevalence the occurrence of CP has not been officially tracked or measured. We do not know the effect of CP on the lives of Irish families. ELEVATE will ensure that their stories count, providing reliable data which can be used to highlight their needs and ensure, visibility in the eyes of policy and decision makers.
READ: How to support children with cerebral palsy in local community
We are on a path to revolutionise the delivery of CP care in Ireland. Last year, the Cerebral Palsy Foundation announced a programme of excellence to deliver upon that aim, working through hubs in UCC, TCD and RCSI. A key part of that work is reducing the age of CP diagnosis in Ireland to less than 12 months. Over 250 high-risk infants have been screened across the country in the first nine months of the project under the leadership of Prof Brian Walsh, Consultant Neonatologist CUMH and Principal Investigator at INFANT, UCC.
By fostering collaboration between clinical, academic, and industry partners, as well as involving individuals with CP and their families from the outset, Ireland is set to become a global leader in CP research and care. Ultimately this programme aims to provide hope and better outcomes for children and families impacted by CP.
Follow RTÉ Brainstorm on WhatsApp and Instagram for more stories and updates
Prof Deirdre Murray is Chair of Early Brain Injury and Cerebral Palsy at UCC. Prof Geraldine Boylan is Director of the INFANT Research Centre at UCC. Rachel Byrne is the Executive Director of the Cerebral Palsy Foundation.
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
