Cerebral Palsy Foundation Launches Programme of Excellence to Revolutionise Cerebral Palsy Care in Ireland

Foundation partnering with University College Cork, Trinity College Dublin, RCSI University of Medicine and Health Sciences, and Children’s Health Ireland to establish Ireland as an international leader for Cerebral Palsy care and research

Dublin, Ireland – The Cerebral Palsy Foundation (CPF) has announced the launch of a Programme of Excellence to revolutionise the delivery of cerebral palsy care in Ireland. Through the development of three major clinical and research hubs at University College Cork (UCC), Trinity College Dublin (TCD), and RCSI University of Medicine and Health Sciences, this first-of-its-kind initiative will establish Ireland as an international leader in cerebral palsy care and research. Children’s Health Ireland (CHI) is an implementation partner in the academic healthcare programme.

Cerebral Palsy (CP) is the most common childhood-acquired, lifelong physical disability. Many individuals with CP face significant and unnecessary challenges in their daily lives, including problems with movement, speech, and other body systems.

An estimated 150 babies receive a CP diagnosis in Ireland each year, and an estimated 3,000 children and young people and 9,500 adults are living with CP in Ireland. Early intervention and the right care pathways can make a significant difference in the long-term outcomes and quality of life for people living with CP.

Backed by $12.5 million in philanthropic funding pledged from a group of donors including John and Patrick Collison, this five-year programme will change the trajectory of people’s lives affected by CP in Ireland.

The Programme of Excellence will advance CP care and research across four major pillars:

• Clinical Implementation Pillar: implementing the best evidence into clinical practice in healthcare settings.
• Research Pillar: conducting high-quality research programmes and developing an international network of researchers committed to implementation, dissemination, and knowledge transfer.
• Dissemination and Education Pillar: promoting community education and providing professional education and career pipelines to encourage and develop new clinicians and researchers in the fields of CP clinical care and research.
• Advocacy and Policy Pillar: identifying and developing stakeholder groups, supporting individuals with CP and their families to drive improved care.

The programme will build on significant strides already made by the CP research community and leading clinicians from around the world. An Expert Steering Committee of cerebral palsy and non-cerebral palsy experts from clinical care, academia, industry, and the CP community will guide the implementation ensuring a multi-disciplinary and multi-stakeholder approach.

Four priority areas of clinical implementation and research have been identified as priority for the initial phase of the programme:

• Early Detection & Intervention (0-2yrs) led by UCC
• Musculoskeletal and Orthopaedic Care (children and young people) led by TCD
• Community-Based Motor Management Services (children, young people, and adults) led by UCC, TCD & RCSI
• Adult services and support led by RCSI

These priority areas will be piloted in regions across Ireland. Once systems have been developed and proven they will be used as models to expand care across the country. The Programme will utilise already established networks including In4Kids, a Health Research Board national paediatric clinical trial network. CPF is committed to expanding this programme through further research funding and philanthropic support. Institutional support from UCC, TCD and RCSI guarantees its continuation beyond the initial five-year period.

“Our vision is to make Ireland a world leader in the delivery of Cerebral Palsy care.” said Rachel Byrne, Executive Director of the Cerebral Palsy Foundation. “We want to create a sustainable continued care model for infants through to adults with CP in Ireland led by expert clinicians and researchers. We will leverage our extensive network and international expertise on best practice to help drive the programme through collaboration. We welcome all partners, including the CP Community, academia, industry, and government to join us on this journey.”

Lily Collison, whose son Tommy has CP, is a Cerebral Palsy Foundation board member and a long-time advocate for CP care in Ireland. “Cerebral Palsy is the most prevalent childhood acquired physical disability,” she said. “Due to outdated systems and inappropriate interventions, lives are often significantly and unnecessarily compromised. This has long-term social as well as economic implications.” Collison went on to explain that the CP Programme aims to become a world-leader in CP care within five years. “It’s a challenging but achievable goal if we all work hard and smartly together.” she said.

Eilísh Hardiman, Chief Executive of Children’s Health Ireland welcomed this Programme: “Children’s Health Ireland is committed to improving clinical outcomes for infants, children, and young people with Cerebral Palsy. As a partner in paediatric academic health sciences, CHI welcomes collaboration with TCD and UCC to use this philanthropic funding pledge by the CP Foundation to truly make a difference to healthcare, education, research, and innovation in CP care in Ireland.”

Professor Geraldine Boylan, Director of the INFANT Research Centre at University College Cork, expressed excitement for the programme’s potential impact. “We are thrilled to be part of this programme in Ireland and to work with the Cerebral Palsy Foundation, healthcare & research community, and families to make a significant and positive difference in the lives of people with cerebral palsy. Early intervention is critical for people with CP. The earlier we can diagnose and intervene, the better the outcomes for the child and the family.”

Professor Colin Doherty, Head of School of Medicine at Trinity College Dublin said: “This programme provides a rare and unique opportunity for Ireland to become a world leader in cerebral palsy care and treatment. Trinity is working alongside other partners to make real discovery in the development of new diagnostic techniques, new therapies and new pathways of integrated care between the hospital and the community and between childhood, adolescence and adulthood for people with cerebral palsy.”

Professor Cathal Kelly, Vice-Chancellor, RCSI University of Medicine and Health Sciences said: “We are really pleased to be a partner in this important initiative which will have a positive impact on the lives of people with cerebral palsy. As a university wholly focused on health, RCSI is deeply committed to educating the next generation of health care professionals and to research which drives improvements in patient outcomes and quality of life. The RCSI team will now build on the School of Physiotherapy’s track record of leading research and education on cerebral palsy, with a particular focus on adulthood, as part of this new collaboration.”

The Programme will also support the development of a Cerebral Palsy Register in Ireland, enabling the collection of important data to inform research and improve care.

A new network putting children at the centre of decision-making in healthcare was launched today at University College Cork.

Funded by the Health Research Board (HRB), In4Kids, the Irish Network for Children’s Clinical Trials, will support innovative clinical research and trial design for children in Ireland. It is the first clinical trials network in Ireland to focus on children’s health.

Better patient outcomes

Evidence shows that research-active hospitals have better patient care outcomes. In4kids will allow healthcare staff and researchers throughout Ireland to work together through a multidisciplinary network, with access and support for participation in national and international clinical trials with particular emphasis on rare paediatric diseases and high medical need areas.

The network is developing educational and training resources for everyone involved in clinical trials and will soon establish a young persons’ advisory group. The network also aims to ensure that children and their families are involved in clinical research from an early stage and that the research is relevant and accessible to them.

In4kids is the Irish hub in the c4c network, a pioneering European network that aims to facilitate the development of new drugs and other therapies for the entire paediatric population.

Children are not little adults

Paediatric patients have developmental, physiological and psychological differences from adults. Medicines and treatments made for adults therefore cannot simply be applied to children.

Professor Geraldine Boylan, lead for the In4kids network and INFANT Centre Director, UCC, said: “All children must have access to innovative therapies and medicines that have been developed with the same rigour and urgency as those developed for adults. We have a great team of investigators in our network and in4kids will support them to roll out the latest clinical trials for children across Ireland.”

Professor Helen Whelton, Head of College of Medicine and Health, UCC said: “In4kids is working to ensure Ireland produces excellent clinical research and clinical trials to benefit all children. We are launching a paediatric network to ensure that every child is seen and heard and has access to the best possible therapies and interventions. Our children deserve and must have the same access to high quality, evidence-based health care as adults.”

Patient representative, Cameron Keighron, who has been living with Type 1 diabetes for 8 years, said: “I am passionate about including the lived experience of people in all elements of research, particularly the voice of young people. Including young people in research is often overlooked but I truly believe that we have an important voice to contribute to shaping a better world, without us, research will never have the full picture.”

As part of the launch, leading experts addressed the challenges and opportunities for clinical trials in children in Ireland as well as announcing a new collaboration between the Glucksman and In4Kids.

Learn more about In4Kids here.