Cerebral palsy (CP) affects over 20 million individuals worldwide, making it the most common physical disability of childhood.
The current bench to bedside translation of care into clinical practice is 17 years – the lifetime of a child! We want to dramatically reduce this duration.
Despite the existence of over 180 different treatments for CP, only a small fraction of them have been proven effective through high-quality clinical trials.
To drive a conceptual shift in CP research methodology to accelerate the pace of clinical trials and swiftly integrate new treatments into standard care practice. We will do this by:
Adaptive trials are a cutting-edge research methodology that allows us to find effective treatments faster.
You can accelerate discoveries by joining the Cerebral Palsy Global Clinical Trials Network.
You’ll be helping to supercharge CP research so that it harnesses the talents and results of the world’s best researchers, in real-time. Standard clinical trials produce excellent results that change lives, like Isolde’s – and they continue to do so. But the new frontier of adaptive trials gives us the opportunity to speed up the discoveries to change lives faster.
Speed to run: faster to organise and faster to complete.
Speed to discover results: if a treatment is seen to be ineffective, the trial can stop faster. If a treatment is quickly found to be effective, we can bring the answers to families faster.
Speed to apply findings: results can be immediately translated into real-world practice.
Speed to improvement: we can continually update the optimal set of treatments according to the very latest findings.
Access to global expertise: we can share findings across the globe,
harnessing the power of the world’s best researchers.
International findings: we can benefit from concurrent research in other countries – even while it’s running.
Individual differences: Adaptive trials cater to individual patient differences. Researchers are able to tease out the reasons for responders and non-responders, and provide insights for less common subtypes such as dystonia and ataxia.
Stop if ineffective: less people are exposed ineffective treatments, allowing exploration of promising alternatives. Over time, we can assign more participants to whichever treatments appear to be performing best and fewer participants to those treatments which are not performing as well.
The CP Global Clinical Trials Network believes that the voices of those with lived experience are not only valuable but essential and will be included at all stages of our research.
Our work prioritises the involvement, perspectives, needs and preferences of people with cerebral palsy, their family members and care-givers at every stage of research. Individuals with lived experience of CP are not only represented on our leadership team, but many play a key role to ensure our shared work is relevant, meaningful and impactful.
Together, we’re driving positive change and shaping a future where everyone, world-wide, affected by cerebral palsy has a seat at the table.
CP Global Clinical Trials Network’s approach involves several stages, each contributing to the ultimate goal of transforming CP research.
Our network is based on collaboration among researchers, healthcare professionals, people with lived experience, and advocacy groups across the globe. These partnerships enable the pooling of resources, knowledge, and expertise, creating a robust ecosystem for innovative research.
Central to our network is a world leading adaptive trials expert – Professor Tom Snelling (Head of Health and Clinical Analytics Lab (HCA). Paediatrician and epidemiologist at the School of Public Health, The University of Sydney). Under Prof Snelling’s guidance and existing statistics institute infrastructure, we will build a network with the necessary expertise and shared infrastructure to handle complex adaptive clinical trials.
HCA aims to improve health through innovation in the process of clinical research, improving the quality, effectiveness and the efficiency of the healthcare-research ecosystem. HCA applies its highly developed expertise in Bayesian causal inference to the complex needs of clinical and policy decision-makers. HCA supports and mentors a growing number of students and early career researchers, building skills and improving the quality of health research.
You can be part of revolutionising cerebral palsy research and unlocking opportunities for growth, collaboration, and impact by joining the CP Global Clinical Trials Network today.
Together, we can accelerate the discovery, translation, and implementation of effective treatments for cerebral palsy, transforming lives and shaping the future of healthcare.
CP Global Clinical Trials Network is a membership-based network.
The CP Global Clinical Trials Network welcomes everyone, including existing research networks, organisations, clinicians, researchers, and people with lived experience of CP.
We offer two forms of membership which are valid for 2 years and any individual or group may fit into either category.
Associate Member – this membership is open to individuals without the capacity or infrastructure in place to run clinical trials, but still have a keen interest in participating in the CP Global Clinical Trial Network. Examples of who can become Associate Members include; any person over 18 with lived experience of CP, their family members and carers, clinicians, researchers, any organisation involved in the delivery of care for people living with CP.
Site Research Organisation (SRO) Member – SRO Membership is open to those with existing capability and infrastructure to run multi-centre clinical trials for people with CP or at risk of CP. Examples of who can become SRO members include; any organisation involved in CP research e.g. Medical Research Institute or any research or hospital network involved in CP research.
Please contact the CP Global Clinical Trials Network Manager to express your interest in joining the Network, would like further information or have any questions.
Email: cpgctn@cerebralapsly.org.au
What are the benefits of joining?
CP Global Clinical Trials Network provides exclusive access to the latest advancements in adaptive clinical trials for CP. We lead in innovative research methodologies, gaining insights into adaptive trial designs, data-driven decision-making, and new treatments. Stay ahead in this rapidly evolving field and expand your knowledge base with us.
CP Global Clinical Trials Network unites a diverse community of clinicians and researchers worldwide with a shared goal of accelerating CP research. Collaborate and engage with leading experts, exchange ideas, and form meaningful partnerships. Benefit from our collective expertise and amplify the impact of your research.
CP Global Clinical Trials Network is dedicated to quickly applying research findings to everyday care for people with CP. Members help bridge the gap between research and clinical practice by sharing evidence-based protocols and best practices through seminars and networking events. Our goal is to improve outcomes and quality of life for individuals with CP.
CP Global Clinical Trials Network honours the contributions of its members. Active members gain visibility as thought leaders and collaborators in the global CP research community. Opportunities for professional development, mentorship, and leadership roles are available, allowing members to shape the future of CP research and make a lasting impact.
The CP Global Clinical Trials Network is a multidisciplinary team of researchers, statisticians, clinicians, philanthropists and people with lived experience of CP from around the world, who conduct CP research with high impact.
Chair of Allied Health, Cerebral Palsy Alliance Research Institute, Faculty of Health Sciences, University of Sydney.
Professor, Department of Neuroscience, University of Copenhagen & Head of Research and Development, Elsass Foundation.
Editor Developmental Medicine and Child Neurology Journal, Université Libre de Bruxelles.
Head of Paediatric Neurology Unit & Director of Neurogenetics, Monash Children’s Hospital & Monash Health.
Senior Researcher in the Dept of Research & Development at the Elsass Foundation.
Paediatric Emergency Physician and Research Lead, Monash Children’s Hospital, Melbourne, Australia. Chair, Paediatric Research in Emergency Departments International Collaborative (PREDICT) Network.
Head of Health and Clinical Analytics Lab. Paediatrician and epidemiologist at the School of Public Health, The University of Sydney.
President, CEO & co-Founder, Cerebral Palsy Research Network
Research partner – Expert in lived experience
Global Clinical Trials Network Manager, Cerebral Palsy Alliance Research Institute, Brain and Mind Centre, The University of Sydney
Clinical Trials Coordinator, Cerebral Palsy Alliance Research Institute, Brain and Mind Centre, The University of Sydney
CRE Program Manager, Cerebral Palsy Alliance Research Institute, Brain and Mind Centre, The University of Sydney
Our publications
“The critical need to accelerate cerebral palsy research with consumer engagement, global networks, and adaptive designs.”
Thomas, SP (Thomas, Sruthi P.); Novak, I (Novak, Iona); Ritterband-Rosenbaum, A (Ritterband-Rosenbaum, Anina); Lind, K (Lind, Karin); Webb, A (Webb, Annabel); Gross, P (Gross, Paul); McNamara, M (McNamara, Maria)
Group Author: CP Global Clinical Trials Network (CP Global Clinical Trials Network)
Answering the call: co-designing a global trials network for cerebral palsy
Iona Novak, Michael Fahey, Bernard Dan, Simon Craig, Alexandra Griffin, Paul Gross, Mikkel Damgaard Justiniano, Annabel Webb, Maria Mc Namara, Jens Bo Nielsen, Thomas Snelling, Anina Ritterband-Rosenbaum, and M. Wade Shrader, CP Global Clinical Trials Network
Watch this space for news and upcoming events.
Cerebral Palsy Alliance Research Institute, Brain and Mind Centre, Level 4 88 Mallett Street, Camperdown, NSW 2050, The University of Sydney
Email: cpgctn@cerebralpalsy.org.au
I'd like to know more about the CP Global Clinical Trials Network and/or becoming a member.
