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Each year we invest millions of dollars in a range of cerebral palsy research projects in Australia and overseas. Find out how our Grants program can help start or progress your project.

Grant recipients 2021/2022

Dr Vuong Le

Deakin University

Project Grant (PRG00321)
AU$ $298,678.00
Fidgety Movement Detection for Robust and Interpretable Cerebral Palsy Risk Assessment

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This research aims at building smart software systems that automatically recognize the risks of cerebral palsy (CP) in babies using artificial intelligence (AI). The software will look at the videos of the babies and recognizes if his/her movements are normal or containing early signs of abnormality caused by cerebral palsy.

The risk assessment process is currently done by doctors who are specifically trained to recognize the abnormality. The doctors’ assessments are reliable but may not be easy to access. In many areas in the world, there is no doctors qualified for such assessment. Even in Australia, waiting to see these specialists may take a long wait time. These limitations delay the support process and prolong the worries of the family.

Fidgety movements (FMs) are the most important signs of early cerebral palsy risk. This type of body movement is very subtle and hard to recognized for both untrained people and usual computer programs. In this project, we design the first AI software that can find out those important signs. The software will first understand what the FMs are from their medical descriptions. Next, it will “learn” to detect the FMs and calculate the CP risk by observing example videos. Finally, it will further improve itself by asking the doctors about the hard cases that it is unsure about.

With this automatic early detection framework, the parents can simply record a video of the baby, then the software will report the risk of CP and suggest whether they need to go see the doctor for further assessment. Especially, this smart software can also provide explanation on how it came up with the decision, similarly to how human doctors explain their diagnosis. This project will make CP risk assessment available to more families, with lower cost, and in shorter time.

Dr Ingrid Honan

Cerebral Palsy Alliance Research Institute

Project Grant (PRG00821)
AU$ $199,346.00
Utility of the Bayley-III LM/LVi for Children with Cerebral Palsy

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Children with cerebral palsy (CP) are more likely to experience cognitive impairment than typically developing children. Cognition is the way that your mind learns new knowledge and processes information. These difficulties can significantly impact learning, socialising and independence.

Early intervention has been shown to improve aspects of cognition. However, we need to be able to accurately detect those with difficulties early. A range of internationally recognised assessments tools aim to do this.

The Bayley Scales of Infant and Toddler Development III (Bayley-III) is one widely used tool for children under 3.5 years. Children are challenged to perform various tasks through play, and credit is awarded. Many tasks are timed.

Children with CP who have difficulty moving their hands, have a vision impairment or speech delay are not able to complete tasks as fast or accurately as other children their age. This likely leads to an underestimation of cognitive abilities.

Dutch researchers have developed a version of the Bayley-III for children with motor, vision and/or verbal impairment (Bayley-III LM/LVi), requiring less accurate fine motor manipulation, removing time limits, and allowing non-verbal responses. However, it was not available in English.

We have translated this version of the Bayley-III to English and want to research:
1)           Whether the translation is correct and appropriate.
2)           Whether the assessment still tests cognition in the same way and has not become easier/harder due to the changes.
3)           Whether there is a sub-group of children with CP that it is most useful for, and who these are.
4)           Clinician experience of the adapted assessment.

This research is expected to result in more accurate assessment of cognition in children with CP. This will enable us to better identify which children experience cognitive impairment early, to ensure that they have the greatest opportunity to receive intervention and supports.

Dr Angelica Allermo Fletcher

Coast District Health Board

Project Grant (PRG01021)
AU$ $200,000.00
Piloting and evaluating the feasibility of an Early Diagnosis Hub in New Zealand

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Reducing the age of cerebral palsy (CP) diagnosis allows for timely access to targeted, early intervention, leading to a lifetime of improved outcomes.  International expert guidelines, based on best available scientific evidence, state that many babies can be diagnosed with CP, or at least identified as having high risk of CP, as early as 3 months of age by using three diagnostic tools: General Movements Assessments (GMA –  assessment of babies’ movements), Hammersmith Infants Neurological Examination (HINE –  standardised neurological assessment, and brain imaging, MRI. Based on these guidelines, the New Zealand Cerebral Palsy Clinical Network (CPCN) has developed a national Best Practice Recommendation for Early Diagnosis of CP, Surveillance and Intervention.

A large gap exists between the evidence-based practice recommendation and the clinical reality in NZ. Currently, less than 40% of children with CP are diagnosed before 12 months of age, causing delays in accessing CP specific therapy and ongoing surveillance to prevent medical complications. Neurodevelopmental follow-up and early intervention in NZ is highly fragmented and varies significantly between health practitioners and locations, with currently no standardised follow-up pathway for infants with high risk of neurodevelopmental disability, including CP. Co-ordination of assessments and collation of results is difficult and puts a large strain on whānau with multiple clinical appointments, inconsistency in communication and delay in accessing support. Inconsistencies in follow-up care also mean access to health services are inequitable, putting some children and their families at a further disadvantage.

We propose a feasibility study to implement the Best Practice Recommendations through a regional Hub. The Hub would include a multi-disciplinary high risk face-to-face clinic, a virtual outreach clinic and online support for health professionals and whānau to enable earlier diagnosis, earlier CP specific interventions, surveillance of medical complications and emotional and practical support for whānau.

Ms Jessica London

TurnTo

Project Grant (PRG01621)
AU$ $150,000.00
Knowledge translation of scientific papers in cerebral palsy for health consumers using Artificial Intelligence and Machine Learning

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For people living with CP there are many interventions available to improve health, functional abilities, participation, and quality of life. In the most recent 2020 Traffic Light review for CP, 182 new interventions were reported since the previous review in 2013.

However, there is a huge gap between these discoveries and advancements being made and these being implemented. This gap from clinical research to implementation has been estimated to take an average of 17 years. There are many significant barriers contributing to this gap including information overload, outdated data consolidation means, health literacy gaps, and the proliferation of easily accessible misinformation.

Behaviorally, health consumers are turning online for health information, with studies showing over 80% of internet users go online for health information, and social media becoming a primary vehicle for this search.

The fields of machine learning (ML) and AI, particularly natural language processing (NLP) , have recently demonstrated the potential for how medical literature can be automatically processed and curated with meaning. Applications of ML on clinical data are now attaining levels of performance that match or exceed human clinicians.

This research project is going to develop specific novel AI and ML models using NLP to extract and translate medical evidence from free-text literature to infographics and summarised information for CP health consumers.

Across the medical AI domain there are other platforms that have already developed similar models, however these platforms remain very academic and only include RCTs. This research project will develop AI models that produce evidence based treatment information from RCT and observational papers searchable by individualised needs, goals, and updated in real-time. Secondly, this research project uses an action research based model to engage health consumers in identifying their needs and priorities for knowledge translation, and cycles of adapting the usability of the information delivery.

Prof Benjamin Reubinoff

Hadassah University Medical Center

Project Grant (PRG02521)
AU$ $100,000.00
Human Embryonic Stem Cells for modelling and discovering novel therapies for diffuse white matter injury

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Cerebral palsy (CP), the most common motor disability in childhood, includes a group of disorders affecting movement, co-ordination, and cognitive abilities in some patients. The brain consists of gray and white matter, which include the nerve cell bodies and the oligodendrocytes (OLs), respectively. OLs produce myelin that coats nerve cell fibers, enabling speedy transmission of impulses. Damage to OLs slows nerve transmission and impairs brain function. White matter injury (WMI), diffuse or cystic, is the leading cause of CP in preterm infants, resulting from intrauterine infection or lack of oxygen (hypoxia). There is no therapy for WMI.
During brain development, neural stem cells differentiate into oligodendrocyte precursors, which further differentiate into pre-oligodendrocytes (pre-OLs), which later mature into myelin-producing OLs. Pre-OLs predominate the white matter during the time of peak incidence of WMI (23-32 gestational weeks), and are the main population that is adversely affected in preterm WMI. Hypoxia or inflammation results in pre-OL death that is followed by generation of a new pool of pre-OLs. However, these new pre-OLs fail to mature into myelin-producing OLs. This maturation arrest leads to lack of myelin and impaired white matter.
A fundamental obstacle in understanding the cause of maturation arrest in the preterm brain and in developing novel therapies is the lack of an appropriate animal model. Here we proposed to use human embryonic stem cells (hESC)-derived-OLs for modeling WMI in CP. Indeed, in preliminary results, we show the potential of hESC-derived OLs to model the hypoxia-induced maturation arrest. We will further use this model for screening and identifying molecules that will promote maturation of arrested pre-OLs, which may serve as novel drugs for CP. In preliminary results we identified two small molecules that could overcome the maturation arrest. This project may pave the way to the development of novel therapies for CP.

Dr Sian Williams

The University of Auckland

Project Grant (PRG02821)
AU$ $200,000.00
Early brain development and neurodevelopmental outcomes in moderate-late preterm babies

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Approximately 5,000 babies are born preterm each year in Aotearoa New Zealand (NZ), with 80% born between 32- and 36-weeks’ gestation, or ‘moderate-to-late’ preterm (MLP). Whilst the chances of survival for MLP babies are excellent, they are 36% more likely to have developmental delay or disability (e.g. cerebral palsy, CP) than their peers born at term, and 50% more likely to have special education needs. They also represent around 20% of children who will later be diagnosed with CP. However, MLP babies usually do not receive any routine brain imaging or developmental follow-up. As a result, we know very little about why these babies are at a higher risk of later impairment. Meanwhile, the identification of CP and other developmental difficulties may be delayed in MLP babies, missing a valuable window for early intervention and support for families.

As part of a separate study to understand how early feeding affects brain growth in MLP babies, we have found that some have unexpected changes on the brain magnetic resonance imaging (MRI) soon after birth, but they had largely disappeared at a second scan around the baby’s due date. Similar brain changes have also been seen in very preterm babies and predicted later developmental problems. However, we do not know how common they are, their causes, and what they mean in MLP babies.

The aim of this study is to determine the frequency of early brain changes in a larger group of MLP babies, identify possible causes, and track how they relate to their later development.

We hope this study will help inform healthcare teams to identify those MLP babies at high risk for later developmental problems, so that they can be monitored more closely and may benefit from early intervention.

Dr Cathy Morgan

Cerebral Palsy Alliance Research Institute

Project Grant (PRG03321)
AU$ $218,383.00
Early communication intervention for infants with or at risk of cerebral palsy

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Many people with cerebral palsy (CP) have communication difficulties, often leading to social, emotional and educational challenges. Research shows that children with CP who were not talking by 2 years of age, are more likely to have permanent communication problems. We know early targeted training is helpful for babies with CP to learn how to move and walk, but it is less clear when it comes to communication skills.

We want to understand if teaching parents communication strategies before their baby is 12 months old leads to better communication skills at 2 years. We will be comparing a well-known communication program called “Hanen: It Takes Two to Talk” to a usual care (waitlist control) group. Hanen teaches parents how to play with their baby, and how to encourage and respond to their baby’s early communication attempts. The program is effective with other groups of young children with disability including Autism Spectrum Disorder, but there is very little high-quality research on any program focusing on early communication in babies with CP.

Throughout the study period, all children will have access to usual care speech pathology intervention. Half of the participants will complete the Hanen program before their baby turns 12 months, and the other half will participate in usual care intervention. The usual care group will also complete the Hanen program after the study finishes, when their baby is 24 months old. We will be measuring each baby’s communication skills, problem-solving skills, social emotional skills, and parent- infant interactions. We will complete assessments before the intervention begins, and at 24 months, to measure if any change has occurred.

This study will help us understand the value of early communication intervention for babies with CP and their parents, to provide future guidance regarding effective early communication intervention.

Prof Iona Novak

The University of Sydney

Project Grant (PRG03821)
AU$ $264,000.00
Research Fellow for Advance Therapeutics

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SITUATION AND WHY IS IT OF INTEREST?

Advanced Therapeutics are novel therapies based on genes, tissues or cells, plus cutting-edge technologies. Advanced Therapeutics offer revolutionary opportunities to cure previously incurable conditions including cerebral palsy. Research momentum has been gathering with increasing numbers of cerebral palsy stem cell clinical trials. To date only 2 of the 31 Cerebral Palsy Alliance Research Institute staff are dedicated to cure, with all the expertise in cells. Several other therapeutics exist (Etanercept, medicinal cannabis, neuromodulation), which are currently being over-looked. Furthermore, there are no personnel wholly dedicated to bench-to-bedside and regulatory knowledge translation – an essential core skillset for bringing a new therapy to market and patients.
CHALLENGES FACED? Despite the excitement from Advanced Therapeutics, researchers face a complex regulatory ecosystem to bring therapies to market and ultimately to patients. Surveys indicate major barriers include regulatory (34%), technical (eg manufacturing standards) (30%), financial (10%) and workforce shortages. These hurdles are as big as the clinical trial itself and require dedicated personnel.
WHAT CAN BE DONE? The design of Advanced Therapeutics clinical trials lay the groundwork for successful translation. Trial start-up activities require not only extensive and comprehensive documentation, but also demand broader interactions over-and-above conventional trials (such as the Therapeutic Goods Administration). It is necessary to have multidisciplinary experts with relevant scientific backgrounds serving as mediators in this multi-partite system providing subject matter expertise, communication and oversight. Plus, regulatory and knowledge translation expertise is critical to ensure the carriage of a therapy from the bench into an approved treatment. We are requesting funding for a full-time equivalent Research Fellow dedicated to Advanced Therapeutics and Knowledge Translation based at the Research Institute. Now is the time to broaden the Research Institute’s expertise base to remain on the forefront of testing novel therapies to find a cure.

Prof Thayyil

Imperial College London

Project Grant (PRG04021)
AU$ $225,000.00
Mapping the trajectory of transcriptomic profile in hypoxic ischaemic encephalopathy

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Brain injury occurring around the time of birth (hypoxic-ischaemic encephalopathy; HIE) is a common cause of death and disability worldwide, affecting around four million infants every year, and is a leading cause of cerebral palsy. Treatments that protect the brain in HIE are time-critical, and must match the underlying cause. Currently there are no clinical, imaging or laboratory tests to identify these at the time of birth.

Our previous work in high income countries discovered that the pattern of genes switched on or off in blood clearly discriminates babies with HIE from those with infection, and that the gene pattern correlates with patterns of brain injury on MRI and adverse outcomes, and follows a specific pattern of evolution in the first 72 hours as the injury evolves. Hence, it has a great potential as a point-of-care test in HIE.
Here, we will examine blood gene expression patterns change during the first three days after birth, in babies with HIE in low and middle-income countries (LMICs).

We will sequence blood RNA from 100 babies with HIE at 4 timepoints (birth, 24, 48 and 72 hours of age), recruited to an ongoing study in South India (PREVENT study). All infants will have regular clinical assessments over the first week, infection screening, MRI at 2 weeks and detailed neurodevelopmental outcome assessment at 2 years of age. Using feature selection bio-informatic analysis, we will identify a minimal set of activated or deactivated genes that are associated with long-term disability (gene signature) and will also examine how these genes change over time and their specific biological function (pathways). The gene signature will be then used to develop a PCR based point-of-care test for rapid diagnosis of the underlying cause and time (disease stratification) of brain injury, so that specific treatments (personalised neuroprotection) can be given.

Prof Dinah Reddihough

Murdoch Children’s Research Institute

Project Grant (PRG04521)
AU$ $149,584.00
The Victorian Cerebral Palsy Register project: moving forward

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Since its establishment in 1987, the Victorian Cerebral Palsy Register (VCPR) project has gained recognition in Australia and internationally. With more than 6200 participants, it is one the largest cerebral palsy registries world-wide. After obtaining consent, our researchers collect information about Victorians with cerebral palsy and use this to publish crucial Victorian data on rates, profiles, causes, health services utilisation, and life expectancy of cerebral palsy. The VCPR is a key contributor to the Australian Cerebral Palsy Register (25% of cases) and the national and international research agenda. National reporting on cerebral palsy would be severely impacted if VCPR data were no longer available.

In addition to its important epidemiological research agenda, the VCPR project is a critical enabler of other research projects, such as the development of new assessments or testing of new treatments aimed at improving the health and quality of life of people with cerebral palsy. To date, the VCPR project has collaborated on 147 different projects, underpinned highly valued research grants, and supported 52 students.

Every year, there are more than 100 children newly diagnosed with cerebral palsy who need to be identified and their details registered. In addition, information about current participants needs updating every 5 years, an essential activity if we are to continue to learn about causes, how to prevent cerebral palsy, and test future ways of enhancing health and wellbeing. For example, we are currently planning to identify families not participating in a surveillance program to detect hip displacement and dislocation. Early detection prevents pain and major surgery.

We are seeking funds to continue the work of running the VCPR project. One good solution would be to find long-term donors to support this important work and, in so doing, they would be providing a legacy for the future.

Mr Bishnu Dutta Acharya

Karnali Academy of Health Sciences

Project Grant (PRG04621)
AU$ $32,000.00
Effects of a low-cost seating system for children with severe Cerebral Palsy on Quality of Life, upper limb function and impact on their family

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Cerebral palsy (CP) is a heterogenous group of permanent unchanging disorders of the developing brain and is the primary cause of motor disability among children globally (1,2). The estimated occurrence of CP varies but the prevalence is suggested to be higher in developing countries (3).
The major cause of movement impairment among children with CP is damage to the motor system (4,5). Children with markedly impaired motor ability that are non-ambulant commonly have severely affected postural control in upright sitting. To enable upright sitting, children with CP require a support system that promotes inclusion and hand use and may prevent further deterioration of musculoskeletal alignment and associated complications. Evidence suggests the use of modified seating systems promotes postural correction and decreases long-term musculoskeletal complications (6). Low-quality evidence has shown that adaptive seating devices play an important role in the child’s functioning, interaction with the environment and friends, easing parental care and promoting a feeling of independence (2,7). It is estimated 40% of children with CP who are non-ambulant require the long-term use of an adaptive seating system (7,8).
In low-middle income countries like Nepal there are many children with CP who have no access to seating systems due to the prohibitory costs or the unavailability of any suitable locally produced seating system. The provision of low-cost adaptive seating would greatly benefit this very vulnerable population.
While there is evidence to suggest adaptive seating is beneficial, no randomised controlled trial has been conducted to investigate whether these devices improve upper limb function, quality of life of the children with CP or decrease caregiver burden. Therefore, this project will be the first study to conduct a randomised controlled trial investigating the effects of a low-cost adaptive seating system that is feasible to use in Nepal, in children with CP.

Dr Angie Morrow

The Sydney Children’s Hospital Network

Project Grant (PRG05121)
AU$ $100,000.00
The efficacy of biofeedback assisted relaxation training for the management of procedure related pain and anxiety in children and young people with cerebral palsy

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Our team has shown that two out of three children and young people (CYP) with cerebral palsy (CP) experience pain, often caused by treatments or therapies for their CP. We have shown that pain is usually poorly treated and relies on medications, with little use of alternative and non-pharmacological treatments. Young people and adults with CP have told us that they want more options for managing their pain.

Our team of clinicians and researchers will work together with advisory groups composed of young adults with CP and caregivers of CYP with CP to design and conduct a study to evaluate the role of a novel treatment for pain. Biofeedback assisted relaxation training (BART) has been used to manage pain in a variety of settings and has shown promising results in our work with CYP with CP having botulinum toxin injections. We will conduct a randomised controlled trial to see how effective BART is at helping CYP manage pain when they are undergoing treatment in hospital. We will use the BrightHearts app, which was developed and evaluated by our team to deliver BART to children. BrightHearts features a colourful digital artwork which responds to changes in heart rate and has been the recipient of multiple grants and awards.

We will also measure self-efficacy and pain coping skills to look at how these factors affect the experience of CYP undergoing painful treatments and therapies. We will interview CYP with CP who have used BART to ensure their voice is heard in our results. We believe this closer understanding of pain will lead to better treatment in the future.

Our goal is to reduce the burden of pain for CYP with CP by improving our understanding of their experience and providing more options for treatment.

Dr Michele Hansen

Telethon Kids Institute

Project Grant (PRG06221)
AU$ $79,517.00
Fertility treatment and cerebral palsy: has the association changed in Australia?

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There are many different causes of cerebral palsy, but these are complex and not fully understood. Understanding the causes of cerebral palsy allows us to identify opportunities for prevention.  Our recent work identified IVF as one important risk factor for cerebral palsy.

In our research, we found that the risk of cerebral palsy was more than doubled for children born after IVF in Western Australia. But IVF treatments are changing over time – these days, a single embryo is usually transferred. This has led to fewer twins and triplets, and fewer babies born preterm after IVF. These changes may have reduced the risk of cerebral palsy. On the other hand, the use of fertility treatments is increasing in Australia. About 1 in 20 women giving birth use IVF, rising to about 1 in 5 women aged 40 or more. It is vital to better understand the current association between fertility treatments and cerebral palsy in Australia.

In this study we will analyze recent data on all children born in Western Australia from 2003 to 2014. We will compare the risk of cerebral palsy for children conceived using fertility treatments to children that were naturally conceived. If the risk of cerebral palsy remains increased for children born after fertility treatment, we will tease out why this risk exists. It may be related to the treatments themselves, to being a twin or triplet, to being born preterm, or to underlying subfertility. This will also be the first Australian research to explore whether using ovulation induction medication outside the IVF clinic setting increases the risk of cerebral palsy.

This research will allow us to make recommendations about the safest ways to use fertility treatments. In doing so, we hope to find ways to prevent children from developing cerebral palsy.

Prof Alistair McEwan

The University of Sydney

Project Grant (PRG06321)
AU$ $95,787.00
Clinical Evaluation of a novel transfer system

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For over 60 years, there has been no fundamental change in the practice of lifting and transferring
people with disability (e.g., bed to wheelchair or commode). Current hoist systems and their
(miss)use cause high levels of occupational injury to caregivers and service providers. Hoists
require two people to assist the transfer due to the significant physical effort required to position
unpredictable users of different shapes and sizes in order to support their safety throughout the
transfer. This increases costs and reduces choice and flexibility for people receiving care.

A new, patented transfer system addresses the problem from a sound engineering position. People are lifted from below, on an inflatable mattress connected to a stationary lifting machine, which lifts them without need for carer assistance and moves them into a wheelchair with minimal effort by one carer.

In 2017/18, Australia’s healthcare and social assistance workers had the third highest incidence of
occupational injury of 55 per 1000 employed persons (compared to construction industry workers at
59 per 1000). In 2014/15,17,565 serious claims were recorded, a 20% increase from 2000/01(ABS)
Cost of injury and illness to these workers in Australia in 2012/13 was estimated at $3.9Bn
(SafeworkAustralia)

Preliminary clinical assessments confirm the potential of this system to significantly reduce the effort and work required by persons managing the client transfers. It now requires the input of users, carers and clinical specialists to evaluate it through structured research, and to provide user-centred recommendations for inclusion in the final design. Particular aspects, including the mattress interface can only be thoroughly resolved with input from these professionals.

The system has the ability to positively disrupt current practice and change our way of thinking
about how we move people, not only in health and aged care environments, but in everyday life.

Dr Megan Finch-Edmondson

Cerebral Palsy Alliance Research Institute

Project Grant (PRG06421)
AU$ $53,955.00
ANZ CP Strategy – lived experience engagement fund

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The proposed project is not a traditional research project because the primary aim is to increase the meaningful engagement of consumers during the earliest stages of the research/project cycle across multiple projects.  Early engagement aims to facilitate quality co-design, through genuine consumer-engaged research/project team partnerships, that support consumer-led priority setting and projects relevant to the Strategy.

 

The funds requested are specifically to support early engagement, i.e. during concept and proposal development. It is expected that once project-specific proposals are developed and/or a funding application is prepared, the research/project team will be responsible for obtaining funds and managing their budget to support ongoing/future planned consumer engagement.

 

Our secondary aim is to collate or develop (if necessary) relevant resources to support routine consumer engagement across the cerebral palsy field. These resources (and links to other curated sources) will be housed on the dedicated Strategy website.

Dr Michelle Wong

The Sydney Children’s Hospital Network

Project Grant (PRG06521)
AU$ $294,454.00
Digital Mental Health Treatments for Children with Neurodevelopmental Disorders

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Emotional intelligence is comprised of a set of emotion-based skills including awareness of emotions in self and others and the ability to self-regulate. However, unlike traditional IQ, emotional intelligence can be taught and can continue to develop across the lifespan. It is therefore often referred to as a set of emotional competencies. Emotional competence has been found to be the foundation of wellbeing and good mental health. However, the current mental health needs of individuals with neurodevelopmental disorders are great, with up to 70% having co-occurring mental health problems. The Westmead Feelings Program: Emotion-based learning for children with autism, is an evidence-based, manualised intervention that has been demonstrated to develop emotional competence skills and reduce symptoms of mental health in the world’s largest school-based trial of an emotions program for children on the autism spectrum.

There is a need to accelerate the expansion of the Westmead Feelings Program to children with neurodevelopmental disorders around the world. The aim of this project is to research and develop a digital version of the Westmead Feelings Program to improve the lives of children with neurodevelopmental disorders at mass scale.

The children who have received the Westmead Feelings Program have improved their emotion skills, developed new friendships, gained greater independence, and learnt skills to manage anxiety and depression. Accompanying the intervention for children are parent and teacher programs and facilitator learning courses to foster cultures of emotional learning and build relationships between children and those who support them. The Westmead Feelings Program manuals and courses has helped over 1,000 children, their parents and teachers across Australia. It has a body of evidence based on 17 years of intervention based research, a codified approach, adoption by community practitioners and endorsement by industry leaders.

Dr Mohan Paudel

Adara Development (Uganda)

Project Grant (PRG07121)
AU$ $100,000.00
Hospital to Home programme for high-risk infants: Preparing for scale

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Adara developed the Hospital to Home (H2H) programme to support sick and small babies in low resource settings and connect children with Cerebral Palsy (CP) and other disabilities to a programme for early intervention. The H2H programme helps babies during their time in the hospital, and once they return home.

In the hospital, the programme focuses on protecting babies’ brains by decreasing stress, protecting sleep, and the safe introduction of feedings. The programme also includes partnering with parents, providing in-depth education and support to ensure they are well-prepared for discharge. After discharge, community health workers make home visits for six months to monitor for adequate growth, danger signs, and developmental delay. When necessary, the baby is referred to a health facility for additional care. If discovered to have a disability, including CP, they are referred to an early intervention family support programme.

We found that H2H helps babies grow bigger, helps mothers to breastfeed successfully, improves vaccination rates, and reduces risk of disability. It also empowers families to care for their sick and small babies. Parents, hospital staff, and community volunteers believe that H2H makes a difference.

However, to help all sick and small babies in Uganda, the programme needs to be “scaled,” or rolled out across many different hospitals and communities. So far, we have tested the programme in a private not-for-profit hospital and surrounding districts. To successfully scale, H2H needs to be tested in the government health system. This grant will allow us to implement the programme in a government hospital and surrounding community and evaluate the best way to roll out throughout the country. We will develop tools to enable widespread programme implementation. With success, this could create the path toward global adoption of H2H, allowing thousands of high-risk babies throughout the world reach their highest potential.

Dr Shona Goldsmith

Cerebral Palsy Alliance Research Institute

Project Grant (PRG07621)
AU$ $50,000.00
Let them thrive: Preventing cerebral palsy in the first 1000 days of life

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Worldwide, at least 50 million people live with cerebral palsy (CP). CP is caused by damage to the brain while it is developing – during pregnancy, around the time of birth, or in the first years of life. There are many different causes of CP, and causes also differ between regions of the world.

There is good news. In recent years, the prevalence of CP has decreased in some high-income countries. Nowadays, we also know a lot more about the causes of CP, which has helped us find strategies to prevent this life-long condition.

What is the next step to preventing more children from developing CP? It is essential that these strategies are ‘translated’ from medical research into practical, relevant and evidence-based resources for the people that need it.

The aim of this project is to review the scientific literature to develop a white paper, bringing together all known evidence-based strategies to lower the risk of CP. This will span strategies prior to conception, during the antenatal and neonatal period, and in the first years of life. This paper will also be used for advocacy, promoting the update and embedding of best-practice strategies for prevention and care.

Importantly the review will be ‘translated’ into a suite of consumable and accessible resources and guides for our target audiences, including expectant mothers and parents, clinicians providing antenatal and postnatal care (obstetricians, midwives, general practitioners, community/maternal health workers) and clinicians providing paediatric care (nurses, general practitioners, allied health and specialists). Resources will be developed in collaboration with relevant stakeholders, and distributed via our established ‘World CP Day’ advocacy platform.

This project will build on the extensive research conducted in the field to date, further contributing to the prevention of CP around the world.

A/Prof Bernadette Gillick

The University of Wisconsin–Madison

Project Grant (PRG08621)
AU$ $200,000.00
Australian Site of the USA-based Neuromodulation Telehealth Study

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The COVID-19 pandemic has impacted clinical trials participation as well as access to clinic-based treatments. This novel study is feasible in pandemic conditions as it delivered in exclusively telehealth format.

Transcranial direct current stimulation (tDCS) is a safe brain stimulation intervention under investigation to improve motor skills in children with cerebral palsy (CP). Research in other populations e.g. Stroke, Traumatic Brain Injury, Parkinsons disease, indicates that tDCS is a valuable for the treatment of depression, anxiety, cognitive impairments and chronic pain. tDCS stimulates the brain by using low levels of electricity to affect the activity and connections between brain cells. The stimulation boosts the brain’s signal and size of response to rehabilitation without the extra fatigue arising from physical training. The electricity is applied using sponges placed at specific locations on the head. Previous studies have shown that tDCS is safe in children and improves motor skills in children with CP when combined with motor training (e.g. rehabilitation).

Generally, tDCS has only been used in the clinic. This limits access, particularly for families who live rural and remote, and makes it more expensive. In addition, the COVID-19 pandemic has highlighted the need to develop new ways for families to access effective treatments. New research by the Gillick laboratory showed that it was possible for families to set-up a tDCS device in their own homes, without the direct supervision of laboratory staff (i.e. via telehealth).

The next step is to demonstrate that families can set-up and actually use an active tDCS device correctly and safely in children with CP in their home, using telehealth. We propose to add an Australian site to the USA study, which will recruit 20 Australian families.

If successful, results could pave the way for cost-effective access to a new treatment.

Dr Beth Allison

Hudson Institute of Medical Research

Project Grant (PRG09321)
AU$ $298,946.00
Lactoferrin to re-establish brain connectivity in fetal growth restriction

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Fetal growth restriction (FGR) is a common pregnancy complication, affecting up to 10% of pregnancies worldwide. FGR describes a fetus that fails to grow to its full potential, principally caused by poor placental function (termed placental insufficiency) such that the supply of oxygen and nutrients to the developing fetus is restricted. The prolonged lack of oxygen has profoundly detrimental effects on the growing fetal brain. We and others have shown that FGR does not alter the number of neuronal cells within the brain, but it does dramatically reduce the number and quality of connections between these cells, via reduced neurite outgrowth, and altered neuronal morphology becomes worse as in utero growth restriction progresses. Adequate connectivity is essential for normal brain function. Accordingly, FGR infants are at high risk for neonatal brain injury and cerebral palsy.

We have found that a simple dietary supplementation called lactoferrin, given to the mum during pregnancy, can protect the developing brain from injury associated with FGR. In her PhD studies, supported with a PhD scholarship from the Cerebral Palsy Alliance, Ingrid Dudink has shown that lactoferrin improves neuronal morphology in late gestation fetal sheep, with increased dendritic arborisation and spine maturation, leading to improved brain connectivity. It is not known whether improved neuronal morphology due to lactoferrin supplementation improves functional outcomes – this is the basis for this grant. We will use our established sheep model of FGR to examine whether maternal treatment with lactoferrin attenuates neonatal brain injury and improves movement, behaviour and learning in FGR offspring.

Dr Hayley Smithers-Sheedy

Cerebral Palsy Alliance Research Institute

Project Grant (PRG09421)
AU$ $119,520.00
Evaluating patient and GP knowledge of congenital CMV prevention behaviours before and after the launch of a GP eLearning module and The PIPP Study

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Cytomegalovirus (CMV) is a common virus and a known cause of disability.  Every year in Australia around 2000 babies are born with CMV of whom around 400 will have long term disabilities including hearing loss and cerebral palsy.  Simple hygiene precautions can reduce the risk of infection in pregnancy however 80% of pregnant women are unaware of CMV or how to reduce their risk of infection.  Despite clear practice guidelines which state that all pregnant women should be informed about CMV, less than 10% of Australian obstetricians, midwives and general practitioners (GPs) routinely counsel women in their care. Important barriers to providing prevention advice include a lack of knowledge and low confidence in providing CMV prevention advice. GPs are the cornerstone of first trimester antenatal care and well placed to provide CMV risk reduction counselling to pregnant women.

Study 1: General Practitioners
We will co-design an eLearning module with GPs, RACGP and CMV Australia. This module will include information on the management or prevention of CMV and will be available free to GPs nationally. We will evaluate the impact of this course with shared care GPs at the Mercy Hospital for Women. GPs’ CMV knowledge will be measured after the course and at six months; and patients will be surveyed at 6 months.

Study 2 – Women Planning Pregnancy
Prevention of Infection in women Planning Pregnancy study (PIPP).  This will be a randomised controlled trial, nested as a sub-study of the multisite PreBabe trial. This project will determine whether a simple educational strategy is acceptable and effective in increasing knowledge, changing behaviour, and preventing CMV infection in women planning pregnancy. Findings will provide information about effective interventions that can be used on a population scale to prevent congenital CMV infection, thereby reducing the burden of disease in Australia.

Prof Iona Novak

The University of Sydney

Project Grant (PRG09521)
AU$ $200,000.00
CP-ADAPT: Cerebral Palsy ADAPtive Trial A New Approach to Accelerate Progress in Discovering and Translating Treatments for Cerebral Palsy

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It takes 14 years to discover a new treatment. And another 17 years to translate new treatments into usual care. A waiting period two childhoods long.

New treatments are discovered and tested in clinical trials. “Regular clinical trials run a bit like trains on train tracks. Everything is pretty much fixed from the beginning to the end. The design, the treatments you offer and how many people you will enrol are all locked in before the first person is enrolled. You do the trial and then you look at the data at the end to see if you’ve answered your question. Sometimes the trial fails to reach an answer because we have had to make assumptions or guesses about the patients and their responses to treatment and those guesses have turned out to be wrong.” Tom Snelling (ACTA). Clinical trials have become difficult to conduct in the pandemic, because the healthcare system is stressed and lockdowns change important parameters while the trial is running, affecting hypotheses and results.

OUR SOLUTION
A global cerebral palsy adaptive trial network (CP-ADAPT) to efficiently evaluate multiple treatments simultaneously, enabling rapid discoveries and translation.

“Adaptive trials are different [to regular trials]. Instead of being like a train on tracks, an adaptive trial is more like setting out on a hike with a map and a compass. You know where you want to end up, but the exact path that you will take depends on the conditions that you encounter on the way.” Tom Snelling (ACTA).

AIMS
The aims are to:
1.            Accelerate the discovery of new cerebral palsy (CP) treatments.
2.            Accelerate the translation of new CP treatments into usual care.

PROJECT OUTCOME
Improved quality of life for people with CP by determining and continually updating the optimal set of treatments in usual care.

Dr Katherine Benfer

The University of Queensland

Project Grant (PRG09621)
AU$ $178,050.00
Families Together: Explorations of Aboriginal and Torres Strait Islander cultural understandings of disability, diagnosis and family support

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Aboriginal and Torres Strait Islander Leaders want strong babies and strong families for their infants at high chance of problems with movement and learning. The Queensland Cerebral Palsy and Rehabilitation Research Centre is committed to First Nations engagement, co-design and leadership to improve the early identification/detection of infants with high chance of a later diagnosis of CP, and fast- track infants to culturally safe Early Surveillance and Early Support (Intervention) programs that increase uptake, lower the age of diagnosis of CP, improve outcomes and quality of life for First Nations families of children with CP across their lifespan.
The University of Queensland is committed to ethical and responsible research that contributes to cultural, social, environmental and economic benefits for Aboriginal and Torres Strait Islander peoples and communities. The University of Queensland Aboriginal and Torres Strait Islander Research and Innovation Strategy outlines UQ’s core values of Indigenous Research and Innovation Excellence, Indigenous Research and Innovation Leadership, Indigenous Knowledges and Methods, Respect, Accountability and Integrity. The University of Queensland recognises and respects protocols for research partnership and engagement established by Aboriginal and Torres Strait Islander peoples, communities and organisations.
This project uses qualitative and participatory action methods to guide engagement of Aboriginal and Torres Strait Islander stakeholders in the co-design of an First Nations specific disability program resources and best-practice guideline for early surveillance and early support for families of children with high chance of Cerebral Palsy and adverse neurodevelopmental outcomes.

Dr Courtney McDonald

Hudson Institute of Medical Research

Project Grant (PRG09721)
AU$ $200,000.00
Bridging the gap; neural stem cell therapy for cerebral palsy

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Cerebral palsy (CP) is the most common physical disability in children and while the incidence for this life-long condition is reducing, there is currently no cure. Neural stem cell (NSC) therapy offers real hope for brain repair, and current lab evidence supports the use of NSCs for brain injury occurring around birth. However, before clinical trials can progress, we have identified key knowledge gaps that need to be addressed. To date no lab studies have been conducted in large animals and this is a key step in ensuring NSCs are safe and effective for human trials in babies. In addition, NSC treatment carries risks. Whether long-term treatment with drugs (immunosuppressants) is needed and how to best deliver the cells by brain surgery is unknown.  Assessing the safety and feasibility of these procedures in a large animal (sheep) of equivalent weight to human babies, is necessary before moving to human trials.

This project will show, 1) if immunosuppression is required in babies and NSCs are capable of migrating in the developing brain and rebuilding damaged brain tissue (Study 1); 2) if neurosurgery (transplantation of NSCs directly into a neonatal brain) and immunosuppression is safe (Study 2). Our project will address these knowledge gaps using our gold standard large animal models of brain injury in sheep. After this project, we will have the evidence to rapidly translate our research by conducting the first clinical trial of NSCs for babies with CP. We have assembled a world-leading research team that has the expertise to address these knowledge gaps and drive clinical trials. Furthermore, we have partnered with Bright Oceans Corporation Silicon Valley (BOCOSV), using their NSCs with prior regulatory, clinical trial approval.

A/Prof Michelle Farrar

University of New South Wales (UNSW)

Project Grant (PRG09821)
AU$ $222,564.00
Development of a resources for decision making in the application of Advanced Neurotherapuetics and Personalised Medicine in Pediatric Neurology

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Advanced therapeutics have made significant progress in the past decade. These include gene and stem cell therapy and experimental neuro-immunotherapies, which hold great promise in treating many severe neurodevelopmental disorders. Many of these disorders manifest as cerebral palsy. These rapid advances, however, pose many challenges and it is unclear how much and what information is necessary to support parents in making an informed decision about their child participating in unproven and potentially risky clinical development of novel treatments. Clinicians experience a challenge in ensuring the parents arrive at an informed consent where there is thorough understanding and realistic expectations are set prior to these treatment decisions.

This project aims to create and pilot test a suite of resources explaining the risks and benefits of these novel therapies with shared stories from parents who have gone through this difficult decision process for their children.

The resources aim to promote informed decision making and support communication between parents and health professionals. Participants will be asked to review newly developed resources and complete a questionnaire assessing the acceptability, helpfulness and comprehensibility as well as the quality and quantity of information provided. The feedback from families and health professionals will be used to tailor and modify resources to provide the best possible resource for families and healthcare professionals.

Furthermore, the investigators will also generate clinical guidelines, led by experts in  advanced therapeutics. These guidelines will address the information gap and application amongst clinicians as these therapies are rapidly evolving. Dissemination of the resources will be undertaken to maximise uptake of knowledge and information. The research team envisions these resources (web-based and inclusive of videos from families and consumers) will be available to the Cerebral Palsy community and other rare neurogenetic disease communities to assist parents in this decision-making journey, care and support.

Dr Mercedes Ruiz Brunner

Instituto de Investigaciones en Ciencias de la Salud (INICSA), Consejo Nacional de Investigaciones Científicas y Técnica

Project Grant (PRG10321)
AU$ $100,000.00
Argentinian Cerebral Palsy Register (RAR-PC)- a study towards development of a national Cerebral Palsy Register in Argentina

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In Latin America, till date, there has not been any established systems of surveillance of cerebral palsy (CP) to define burden, identify the risk factors and to monitor trends of CP to improve health access policies.  The objective of this work is to create the CP register of Argentina, as a member of the Global Low- and Middle-Income Country CP Register (i.e. GLM-CPR).
The registrer will allow us to estimate the prevalence of CP in Argentina, understand the causes, knowing the possible risk factors, and identify prevention opportunities of CP in the local context. We will be working with 7 health centers, from the four regions of Argentina to cover a representative sample of 489.528 persons with motor disability in Argentina. Families together with health professionals will complete a form with information about their child, diagnosis, access to health and therapies. We will work with a community-based rehabilitation network focused on different provinces, to promote a community-based recruitment for children with CP who do not attend rehabilitation centers. Health professionals will have access to free training on classification systems of CP and standardized terminologies (e.g. GMFCS, MACS), so we can all speak the same language. We will provide research training to health professionals and a research scholarship for persons with disability.
The project will also have the participation of the families integrating a collaboration group for the research and activities planned with the children to promote their participation. We will deepen the work of models and materials for community-based rehabilitation adapted to Argentina’s context.
The project will line up with the methodology of the GLM-CPR. This will be one of the first register in Latin America that will allow in the future to generate collaboration networks with other countries in the region.

Prof Gulam Kandaker

Queensland Health

Project Grant (PRG10421)
AU$ $150,000.00
Global LMIC CP Register (GLM-CPR): an international multi-centre register of children with cerebral palsy in low and middle-income countries (Yr 3 & 4 of PG10017)

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Cerebral Palsy (CP) is a common childhood disability. Until recently, there was limited research on CP in low-and-middle-income countries (LMICs) due to lack of comprehensive databases. Using data from CP Registers, we now know that CP is more common in LMICs than in high income countries, is often preventable, and children are often severely affected.

CP registers are comprehensive databases of high-quality information about people with CP, allowing us to understand the epidemiology of CP (how common it is, and what causes CP). They are useful for diagnosing CP earlier and guide planning for interventions and could be used to promote new treatments and prevention strategies.

In 2018, we established the Global LMIC CP register (GLM-CPR). It allows CP registers in LMICs to collect data in a similar way, allowing data to be shared across regions. Through GLM-CPR, we are building a global network to conduct research that aims to prevent CP and improve the quality of services for people with CP in LMICs.

The GLM-CPR network has already: (i) helped build CP registers in 7 countries (Bangladesh, Nepal, Indonesia, Vietnam, Ghana, Zimbabwe, Suriname) (ii) built a database including over 4500 children with CP in these regions, (iii) started supporting existing CP registers in 4 new countries (Jordan, Argentina, Sri Lanka and South Africa), (iv) presented findings in over 50 publications and presentations, and (v) trained over 1500 people to contribute to our registers.

This application is to continue the work of GLM-CRP for the next two years. In this stage the aim  focuses on: (i) supporting the newest CP registers, (ii) establishing a new Latin American LMIC Network of CP registers, (iii) developing resource materials to help diagnose and treat CP early, (iv) share findings to improve our knowledge about CP particularly in LMICs.

Dr Cathryn Crowle

The Sydney Children’s Hospital Network

Project Grant (PRG12021)
AU$ $125,510.00
Understanding the GMA Motor Optimality Score in high risk infants

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The General Movements Assessment (GMA) is a test used with babies from birth until 4-5 months of age to identify whether there is a risk of disability, including cerebral palsy. There is very strong evidence that this is one of the best tests to use with babies for this purpose.

In addition to the global scoring of the GMA which identifies the presence or absence of certain specific movements, called ‘fidgety movements’ the baby’s movement and posture can be further analysed using the motor optimality score (MOS). This assesses the baby’s movements in much more detail. Less is known about this scoring system and whether this score can help us to identify which babies are more at risk of poor development.

We want to know whether the MOS can do this and whether it can help us to give more information to families about the type of development problems their baby may have and how severe these may be.

This is important to know so we can start giving each baby the right amount and type of therapy support at the earliest age possible.

The aim of this research is to understand the use of the MOS to assess a baby’s movement with the aim of predicting future development. We will conduct a thorough search of the literature to report on the evidence so far, and then conduct a study with a large group of babies who were born with serious conditions requiring surgery in the first weeks of life. We hope to determine whether the overall MOS, or components of this score help us to identify which babies will go on to have difficulties with their development in areas such as movement, cognition and language.

Dr Gillian Saloojee

South Africa -CHILD

Project Grant (PRG13121)
AU$ $163,080.00
Natural progression and motor development among individuals with Cerebral Palsy in Low- and Middle-Income Countries – a longitudinal cohort study from childhood to adulthood in rural Bangladesh and South Africa

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Cerebral palsy (CP) is one of the leading causes of childhood disability globally, with most children living in resource-poor settings with little access to therapy intervention. Several studies have identified the underlying causes, functional status, treatment, quality of life and survival of people with CP in high-income countries (HICs) whilst, emerging studies from low- and middle-income countries (LMICs) suggest large discrepancies compared with HICs.

Through a unique collaboration between Bangladesh and South Africa, we have access to detailed baseline clinical information, including gross motor function measure (GMFM) scores of over 700 children, youth and young adults with CP, who are now aged between 4 and 30 years. Baseline data was collected between 2 and 15 years ago. Now we would like to trace and re-evaluate this cohort to understand the natural progression of CP over time. In particular, we are interested in changes in their gross motor function, as measured by their GMFM scores. We will also reassess their motor subtype and motor functional classification and see how these have changed over time. This study will enable us to draw up gross motor curves for children, youth and young adults living in LMICs and compare these to the curves from HICs. This will help us to better understand the trajectory of CP in low-resourced settings and how this is similar or different to well-resourced settings. This will assist in designing appropriate interventions for children, youth and young adults in LMICs which can be evaluated in future studies.

Ms Yana Wilson

Cerebral Palsy Alliance Research Institute

Project Grant (PRG14321)
AU$ $150,000.00
ICPGC Flagship project: aggregating existing genomic data to identify variants contributing to CP aetiology

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Genomic sequencing studies of CP have demonstrated that genetic causes contribute at least partly to disability and other features in a sizeable proportion of individuals. However, the genetic basis of CP is highly diverse, with more than 300 different genes already reported to be involved, including more than 500 different genetic changes, the majority of which are unique to a single individual with CP. About a third of individuals with CP studied to date have a known genetic cause. Up to another third of those tested have genetic changes that may explain their CP, but without adequate supporting evidence to be certain. One way to resolve these CP cases is to join together large sets of genomic data from different studies and compare findings. This way, rare findings become more obvious, and greater evidence for particular genes can be built up.

Therefore, this study aims to combine genetic information from groups worldwide which currently amount to information on between 5,000 and 6,000 individuals. These datasets are those reported by the International Cerebral Palsy Genomics Consortium (ICPGC) and other academic researchers, consortia, diagnostic laboratories, or genetic testing companies, like Genomics England, GeneDx or Invitae. By combining the available data, we will have the power to identify new genetic causes of CP. We will also increase what we know about the way that genes lead to CP. Benefits to patients and families may include increased knowledge of the biology of CP, leading to improved diagnosis, therapy, or treatments. In the future, we will better understand what a positive genetic test result means for a person, regardless of where in the world they come from.

Prof Rod Hunt

Monash University

Project Grant (PRG14921)
AU$ $169,812.00
Formalised Training of Neonatal Neurologists in Australia

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Formal advanced training in neonatology, overseen by the Neonatal/Perinatal Specialist Advisory Committee for The Royal Australasian College of Physicians, is designed to equip trainees with the skills necessary for general newborn intensive care. In general terms, the safe clinical care of patients in the NICU is focussed on cardiorespiratory management, prevention and management of infection, some neurological surveillance and an increasing awareness of the importance of fostering maternal-infant bonding. Training has thus been directed to these areas.

With improved survival, attention is now focussed squarely on reducing all morbidity, with the view to improving long term quality of life. The vast majority of perinatal research is directed at reductions in chronic lung disease, and improved management of infants susceptible to brain injury. However there remains very little dedicated training in aspects of neonatal neurology or neuro-critical care for advanced trainees in neonatal medicine.

 

Monash Children’s Hospital is uniquely placed to provide the first Neonatal Neurology Training Program in Australia with capacity on campus to provide

(i) experience in pre-clinical investigation of potential neuroprotective strategies,

(ii) antenatal counselling and care for families where neurological abnormalities are detected,

(iii) acute clinical experience, with one of the largest NICU’s in Australia, caring for both the extremely preterm infant, and the high-risk term born infant.

(iv) access to training in Prechtl’s General Movements and a dedicated outpatient clinic for the Early Detection of CP, complimenting the routine neurodevelopmental follow-up that accompanies neonatal care.

Dr Timothy Scott

The Sydney Children’s Hospital Network

Project Grant (PRG15021)
AU$ $150,000.00
In their Habitat: Remote assessment of children with disabilities

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Our vision is to harness the power of Virtual Reality and Artificial Intelligence to transform the use of telehealth for children with disabilities. Potential beneficiaries especially are children with cerebral palsy who are the primary clinical caseload for the chief investigator.

During this two year ‘proof of concept’ study we will create a 3D Virtual Reality Concept Clinic for the purpose of revolutionising clinical assessment and the effectiveness of our interventions. This will involve two steps: i. drawing on existing data from the SCHN Paediatric Gait Analysis Laboratory at the Sydney Children’s Hospitals Network to recreate avatars of children with cerebral palsy for the purpose of clinical decision making. This will allow direct clinician comparison of our visualisation with the ‘gold standard’ 3D Gait Analysis, and ii. We will use the 3D VR Concept Clinic to answer a clinical question relevant to children with cerebral palsy. This will demonstrate the benefits of our clinical approach.

This is a stepping-stone to creation of a system whereby advanced remote physical assessment, not previously possible via tele-health, will facilitate clinical decision-making centred on the goals of the child. This will be a major step forward from the limited assessment currently undertaken in, not only in tele-health, but also the outpatient clinic setting. Furthermore, by using technology to relieve the burden of travelling and attendance at hospital, we can provide equity of access for children and their families living in remote areas and assess them in their own environment.

Prof Jozef Gecz

The University of Adelaide

Project Grant (PRG15121)
AU$ $100,000.00
The Australian Collaborative Cerebral Palsy Research Data and Biobank

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The Australian Collaborative Cerebral Palsy Research Group has researched the causes of cerebral palsy (CP) for 25 years. It has led the way in dispelling the myth that most cases are due to lack of oxygen or damage at birth; instead, many cases originate from genetic defects in the sperm or an egg of the parents. Key to these discoveries is the group’s foresight in establishment of a CP Biobank: a unique international resource that stores clinical details, DNA and cells from over 500 families of a child with CP. The combined genomic information extracted from the biobanked materials and supported by the clinical history of the child has shown that about a third of all children in the Biobank have a genetic defect that is the likely cause of their CP. The genetic defects are many and varied and can also cause epilepsy, learning disability or autism. Excitingly, a good proportion of the molecular pathways that are affected by these genetic alterations appear to be amenable to therapeutic, precision medicine intervention. As a growing and complex biological and clinical data repository, the Biobank requires continuous upkeep and coordination to effectively communicate the findings to the participating families. The Biobank is in high demand from the international research, clinical and diagnostic communities to support their research or research translation. Among its immediate benefits are international genomic data aggregation, construction and maintenance of a diagnostic CP gene panel and CP gene database, as well as linked resources of known specific gene-tailored clinical interventions and treatments. The Australian CP Biobank is one of a kind and demonstrates the great utility and application of its resources to facilitate diverse genomic and clinical research to systematically and completely resolve the genetic or environmental causes of CP. It is a resource that cannot be replaced.

Dr Natalie Phillips

The University of Sydney

Emerging Researcher grant (ERG01121)
AU$ 82,299
Identifying the emergence and early development of executive dysfunction in infants with CP

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Children with cerebral palsy (CP) commonly experience impairments in executive functions, which are mental skills that are essential for managing oneself to reach a goal. Executive functions are critical for learning and development during childhood. Impairments in executive functions have a significant impact on everyday life, including academic achievement, social skills, mental health, and employment opportunities into adulthood.

 

In typical development, executive function skills emerge in the second half of the first year of life. Yet, no studies have examined early development of executive function impairments in infants with CP. This represents a missed opportunity for early intervention during a critical period of brain development.

 

This research aims to determine how early impairments can be detected in executive functions in infants with CP by tracking the development of these skills in the first year of life compared to children without CP. This research will also examine whether early impairments in executive functioning identified during infancy are associated with impairment and disability in the second year of life using established measures of early brain development.

Dr Tasneem Karim

The University of Sydney

Emerging Researcher grant (ERG01421)
AU$ 96,178
Evidence based approach to early detection of children with cerebral palsy in low resource settings

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There has been an astounding 35.0% decline in rates of cerebral palsy (CP) over a 15-year period due to multifaceted factors including strategies informed by evidence from long standing CP registers in high income countries (HICs). Better understanding of the trends and antecedents of CP, in addition to implementation of preventive strategies and improved perinatal care, has resulted in reported declines in prevalence in HICs and the changing epidemiology of CP. Extension of these successes to low and middle-income countries (LMICs) is imperative. Lessons from HICs such as Australia, where the lowest rates of CP are observed can accelerate breakthroughs in prevention, early intervention and possibly a cure for CP globally. This study aims to generate data to inform strategies for early detection of children with CP using best practice tools in low resource settings and develop resources for clinicians and primary caregivers of children with CP in low and middle-income countries.

Dr Jesia Berry

The University of Adelaide

Emerging Researcher grant (ERG01521)
AU$ $98,678
Novel linkage to study cerebral palsy, chronic conditions, and developmental delays at school age

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Children with cerebral palsy (CP) often have multiple chronic conditions affecting mental health and quality of life, including intellectual disability, epilepsy, autism, birth defects, and speech and sight problems. This whole-of-population data linkage study examines the prevalence of these conditions with CP (n=845) at school age among 450,000 South Australian children. The population comes from the ‘Better Evidence, Better Outcomes, Linked Data’ (BEBOLD) platform and comprises South Australian families whose children were born from 1993 to 2016, with CP and birth defect notifications followed up until the youngest child is 5 years of age. The linked data sources include registries of births, deaths, CP and birth defects, midwife records at birth, hospital and emergency department visits, community mental health data, school enrolment and the Australian Early Development Census (AEDC) in the first year of full-time school. For a subset of children with CP (n=157, 18% of those captured in the CP register) The team have genomic biobank, parent questionnaire, and brain imaging data. The project received ethical approval on the 12th August, 2021.

The considerable overlap of CP with other neurodevelopmental disorders (NDDs) points to shared causal pathways of likely genetic origin and environmental insults. This research will capture CP, other NDDs, birth defects, genetic syndromes/monogenic disorders from the linked health records. The first objective is to examine using statistical models whether these clinical presentations cluster with certain maternal, pre- and perinatal risk factors, to provide insight on the causal pathways to CP. Second objective is to determine the number of children entering the education system with disabilities and developmental delays, enriched by information captured across the linked data sources. A better understanding of the causes of CP will inform where to target future research and by examining school readiness how to best support the educational needs of children with CP.

Dr Kelsie Boulton

The University of Sydney

Emerging Researcher grant (ERG01921)
AU$ 75,732
Identification of transdiagnostic needs in children and youth with Cerebral Palsy

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Children with Cerebral Palsy (CP) have needs that extend beyond their primary diagnosis, but these needs are often unaddressed by specialist services. For example, mental health needs are often reported by caregivers and individuals with CP, but are rarely addressed with effective assessments and supports. These needs extend across many neurodevelopmental conditions.

To understand more about these transdiagnostic needs, the team surveyed clinicians, researchers and community members around Australia, asking them what information should be collected on families to help understand and support these needs and concerns. From this, the team have developed a nationally-endorsed transdiagnostic assessment set that can be used to compare needs and vulnerabilities across different neurodevelopmental conditions, including CP.

This project offers the first opportunity to extend this assessment set into CP, collecting information on needs and vulnerabilities of a large cohort of children and families with CP. The national team identified cross-cutting needs across neurodevelopmental conditions, including child and caregiver mental health, functioning, economic vulnerability, multidisciplinary supports, health service utilisation and quality of life. This project allows us to assess these needs in CP. From this, the team can conduct a novel comparison of needs across neurodevelopmental conditions. This will provide critical information on how these needs contribute to disability for individuals.

Building on work recently completed with development services around Australia, this project also provides the opportunity to work directly with caregivers and clinicians in CP services. From this, the goal is to develop information and support resources for families to address these unmet and neglected needs.

Ultimately, this project will help understand needs of children and families with CP, and compare these needs transdiagnostically to advance knowledge on social, emotional and economic costs of transdiagnostic needs for the broader disability sector.

Ms Israt Jahan

Central Queensland University

Emerging Researcher grant (ERG02021)
AU$ 100,000
A global program on preventing malnutrition among children with Cerebral Palsy in low- and middle-income countries in the context of Sustainable Development Goals

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Malnutrition is a major global issue and one of the core targets of United Nation’s Sustainable Development Goals (SDG). Malnutrition among children with cerebral palsy (CP) is often ignored, however, we have identified an alarming rate of malnutrition among children with CP in low- and middle-income countries (LMICs) which are often associated with premature mortality and poorer quality of life.

 

This research will develop a global program to prevent malnutrition among children with CP by adopting a comprehensive package in line with the sustainable development goals (SDGs) framework.

 

The core objectives of this research include,

  1. Defining the burden (using primary and secondary data) of malnutrition among children with CP in LMICs,
  2. Standardization of nutritional assessment and monitoring among children with CP in LMICs,
  3. Identification of effective interventions within the SDG framework to prevent/manage malnutrition among children with CP in LMICs, and

4. Advocating for the prevention and management of malnutrition at local, national, and international level.

Dr Eleni Demetriou

The University of Sydney

Emerging Researcher grant (ERG02321)
AU$ 77,155
A comparison of executive function profiles of adults with unilateral, dyskinetic or ataxic cerebral palsy and contribution to quality of life outcomes.

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People with Cerebral Palsy (CP) have physical difficulties and may also with difficulties with executive function (EF). EF refers to skills that include flexible thinking, self-control and working memory. These skills are used every day to learn new information, engage in work, socialise and manage daily life.

Executive dysfunction can lead to difficulties with planning actions to meet long-term goals, organising day to day activities, making decisions, and analysing complex information. As a result, people with EF difficulties may also report dissatisfaction with their quality of life.

The aim of this research project is to understand EF difficulties in adults with CP and determine how these predict quality of life outcomes. It will investigate whether these difficulties in EF vary depending on the classification type of CP and will compare people with unilateral, dyskinetic and ataxic classifications of CP.

This research will also investigate if problems with EF influence balance and gait in people with CP. Our research team has completed research in people with Parkinson’s disease that shows EF influences gait. Importantly it also showed that if we improve EF with cognitive training it has a positive effect in improving gait in this group.

Ms Tanya Martin

The University of Sydney

Emerging Researcher grant (ERG02521)
AU$ 99,707
Does distance matter? The hip pocket thinks so!

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Increasing over the last 40 years, rural and remote areas of Australia have experienced a slow and steady erosion of health care services, within their communities. This has left many rural and remote families who have a child with cerebral palsy, struggling to navigate the challenging complexity of accessing health services that are long distances from their home in tandem with community-based disability services.

For many rural and remote families, in addition to the burden of navigating these complex systems, higher out of pocket costs are associated with transport to travel extensive distances to access specialist treatment.
Therefore, the purpose of this research is to identify gaps in services and the barriers and enablers to equitable access of health and disability services across rural and remote New South Wales. This research will draw on the lived experience of rural and remote families who have children with cerebral palsy. Using an Indigenous strength-based methodology, we will engage with rural and remote families and treating clinicians and specialists to co-design a roadmap for integrated, efficient, easy to understand and access health and disability services.

Dr Rachael Marpole

University of Western Australia

PhD research grant (PHD00221)
AU$ 105,000
Reducing respiratory illness in children with cerebral palsy: A Pilot Randomised Control Trial

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Most young people with cerebral palsy (CP) can expect to live about as long as people with no disability. However, for young people with very severe CP and multiple disabilities life expectancy is very much shorter. This includes young people with severely limited movements over a large part of their bodies, limited understanding and communication, and other conditions such as epilepsy, blindness, or deafness.

When people with CP die younger than expected, it is usually because of chest infections, known as respiratory illness.  The risk of death from respiratory illness for adults with CP is 14 times higher than for adults with no disability. Children and young people with CP also have a high rate of hospital admissions for respiratory illnesses.

The past 50 years have seen vast improvements in medical care and technology. But survival of children with CP is much the same as it was in the 1970s. In 2021 consumers, health professionals and researchers developed a set of recommendations about how respiratory disease in young people with CP should be assessed, prevented, and managed.  These recommendations formed a Consensus Statement because it was based on limited published evidence supplemented by agreement among health professionals and families of young people with CP. The next step is to test if these recommendations can improve the respiratory health and prevent hospital admissions for young people with cerebral palsy at risk of respiratory illness. Consumers agreed that this research is needed.

Mr Pedro Valadao

University of Jyväskylä, Finland

PhD research grant (PHD00321)
AU$ 17,500
Effects of a combined strength, flexibility and gait training intervention on physical capacity, function, neuromuscular and brain mechanisms and cardiometabolic risk factors in children and young adults with cerebral palsy

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Individuals with cerebral palsy (CP) have problems in everyday tasks such as walking and climbing stairs due to a combination of neuromuscular impairments such as spasticity, muscle weakness, reduced joint flexibility and poor motor coordination. Although the brain lesion is nonprogressive in CP, muscle strength and joint range of motion further worsen with time, increasing sedentarism and creating a cycle of inactivity and loss of function. Thus, therapeutic interventions to reduce these secondary problems and maintain function have a key role to enable independent mobility of people with CP and support their lifelong health and wellbeing.

Our aim is to investigate the efficacy of an individually tailored exercise intervention (EXECP) for children and young adults with CP. The EXECP intervention combines strength training for the lower limbs and trunk muscles, flexibility training for identified short lower limb muscles and gait training on a treadmill. Thus, the uniqueness of the intervention is the combination of different training methods to address specific impairments, aiming to optimize functional improvement. Participants with CP will be tested twice before the intervention and twice after the intervention, with all tests spaced by 3 months. This will allow us to understand the effects of natural aging and of the intervention separately. Furthermore, the tests after the intervention will provide important information about how the adaptations are maintained after the intervention ceases. The project will advance our understanding about CP, which is greatly needed to create better interventions to increase their quality of life.

Ms Stefanie Bradley

Holland Bloorview Kids Rehabilitation Hospital, Canada

PhD research grant (PHD00421)
AU$ 105,000
Quantifying neural and muscle activations using exoskeleton-powered gait rehabilitation in children with cerebral palsy

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Children with cerebral palsy (CP) face challenging mobility limitations in everyday life. Research has shown that robot-assisted physiotherapy shows immense promise by enhancing healthy walking movements. My proposed research will compare changes in brain and muscle function between two groups of children (N=10 each) with CP – matched in terms of age, sex, and motor function. One group will receive physical therapy with repetitive use of an exoskeleton device (3x/week for 6 weeks), while the second group will receive routine physical therapy (no exoskeleton; 3x/week for 6 weeks). Paediatric participants will be recruited through the outpatient clinics at Holland Bloorview Kid’s Rehabilitation Hospital.

Amongst individuals with CP, there exists a wide spectrum of brain and muscle dysfunction. For this reason, we will also perform functional brain scans (MRI), to quantify changes pre- and post-therapy, to see if different subtypes of CP show differences in resting brain activity. This will inform us of which subgroups stand to benefit most from robot-assisted therapy. My research will also use muscle recordings with the goal of translating the “muscle sounds” of children with cerebral palsy. We can use this knowledge to combat muscle fatigue and muscle crosstalk which is observed with muscle spasticity.

Overall, this project will contribute knowledge in health research that improves mobility, autonomy, and quality of life. By providing more personalized physical therapy options in children, this research will lead to better opportunities for meaningful participation with peers, education, and eventual employment.

Miss Victoria Coomber

The University of Sydney

PhD research grant (PHD00721)
AU$ 105,000
Music to baby’s ears. An EEG study of newborns’ response to maternal voice and music therapy in the NICU

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During the first weeks of life, sound is important to develop hearing and speech. Babies who spend their first weeks in hospital are at risk of developmental problems, including cerebral palsy. Lack of sounds like the mother’s voice music can add to this risk. And so, can a noisy environment which also affects parents and hospital staff. A baby’s hearing system starts developing in pregnancy and continues after birth. The experience of these sounds is how they learn to speak and communicate. Many people with cerebral palsy have communication difficulties, therefore they need every chance to develop their hearing and speech as much as possible.

We know that it is important to keep noise low enough so that babies can hear gentle sounds such as music and speech.  This is sometimes provided by the mother reading or a music therapist playing to the baby. These services are often funded from donors or charities. We need to find out how babies respond to music to encourage sustainable funding of this service.

We will measure brain activity with a hat of sensors. These are a useful tool that have the capability to describe an infant’s response to music therapy. We will explore what types of sounds produce more brain activity and how infants respond. Infants that are calm and relaxed will sleep better and leave the hospital sooner. This will help reduce the severity of developmental problems including cerebral palsy.

Ms Karen Lansdown

The University of Sydney

PhD research grant (PHD00821)
AU$ 103,263
Mind the gap – an investigation of oral health outcomes and service access among people with cerebral palsy in Australia

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Did you know that your mouth can provide clues about your overall health? Problems in your mouth can also affect the other parts of your body such as your heart and your lungs. Conditions often associated with cerebral palsy such as epilepsy (and the medications used to manage epilepsy) can cause gum problems and related seizures can result in damage to the mouth and teeth.

As a person with a lived experience of CP, I started to realise when I attended medical appointments that no one discussed my son’s oral health. This research will help us know what oral conditions are most common for people with CP so we can identify and manage these conditions early.

People with cerebral palsy often miss out on routine dental care, which can impact quality of life. This research will help us know what aspects of the dental and medical system need to be improved so this can be achieved.

This work will also help us understand what information health care providers need to improve the oral health of people with CP.

Ms Natasha Bear

Curtin University

PhD research grant (PHD01021)
AU$ 63,000
Respiratory hospitalisations in children and young people with cerebral palsy: which children and at what cost?

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Respiratory disease is the leading cause of death in people with cerebral palsy (CP). Approximately 1 in 2 children with CP will go to hospital for a respiratory reason in their lifetime.

The onset of respiratory disease in CP is often gradual. It becomes obvious when a child has many chest infections, but by that time, it is often irreversible. If we can identify those at risk of respiratory illness we could reduce hospital admissions and improve health

There is little focus and resources spent on respiratory illness in CP. Firstly we will investigate the cost of respiratory illness, so we can advocate for more resources in this area.

Some risk factors for developing respiratory illness in CP are known, such as seizures, reflux and requiring a wheelchair to move around. However, the combination of prematurity and CP on respiratory health is unknown. We will investigate what the impact of both prematurity and CP has on long term lung health.

Finally, we want to take all of the known risk factors and build a tool that predicts if a child with CP is at risk of respiratory disease. We will develop a risk prediction calculator, where we can tell people with CP how likely they are to develop respiratory disease. This will be available to everyone online. We would like to identify individuals before serious lung disease has occurred and allow them to receive early intervention and preventative care.

Dr Manik Chandra Das

Central Queensland University

PhD research grant (PHD01121)
AU$ 25,000
Developing culturally responsive early intervention and rehabilitation services for children with cerebral palsy in low- and middle-income countries

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The burden of Cerebral Palsy (CP) is high in low- and middle-income countries (LMICs) and yet majority lack access to early diagnosis, intervention, and rehabilitation services. While conventional state of the art services are not available in rural LMIC settings, often there are local indigenous practices which are transitioned and translated through generations. Many of those practices often do not have any scientific base, however, some of those practices have strong scientific basis which has been evolved over time through lived experience and local knowledge. Compared to conventional services, these local practices are widely acceptable and scalable without investing a lot on service delivery or acceptance. I aim to identify such practices from different LMIC settings using the Global LMIC CP Register (GLM CPR) network and develop a field guide for early intervention and rehabilitation services for the majority world population with disability.

Mrs Ankita Surpal

The University of Queensland

PhD research grant (PHD01721)
AU$ 105,000
Use of telerehabilitation technology to provide developmental follow up assessment of children with or at risk of cerebral palsy

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This research project “Use of tele rehabilitation technology to provide developmental follow up assessment of children with or at risk of cerebral palsy”, is relevant to the current times of information technology advancement.

Most of the Preterm children are not re-assessed for sensory motor impairments after 2 years of age in the public health system. The children who live in remote, regional areas are often missed due to the inconvenience and costs of travel too.

This study would not only allow the Preterm kids who are at risk of CP to be re-assessed for school readiness at 4 and re-assessment of 6-year-old kids of the same category, after they have been in school for at least a year but would also improve the accessibility of this assessment to be conducted anywhere at any time through technology. The success of this project can be used to further research on online assessments and treatments to cover all age groups for the children at risk of CP.

Dr Elys Green

Monash University

PhD research grant (PHD01821)
AU$ 105,000
Advancing Interleukin 1 Receptor Antagonist as a Novel Strategy to Prevent Brain Injury in Preterm Infants

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Infants born prematurely are at increased risk of cerebral palsy.  There is strong evidence to show that these risks are increased due to an underlying inflammatory process initiated around the time of premature birth and perpetuated by infection and life-saving procedures and interventions during their time in the NICU.  Inflammation causes damage to the brain white matter, which in this population progresses to cause cerebral palsy. Anakinra is a medication which is similar to an anti-inflammatory molecule the body makes itself called IL-1Ra.  Anakinra acts to reduce the inflammatory response and is currently used in adults and children as young as 8 months to manage autoimmune inflammatory conditions.  Our study looks at the safety of giving Anakinra to babies born extremely premature, over the first 3 weeks of life.  Once safety is established, we will conduct a larger trial studying the efficacy of this treatment for reducing the risk of long-term complications caused by neonatal inflammation, including cerebral palsy, in extremely preterm infants.

Miss Isabella Pessóta Sudati

Federal University of São Carlos, Brazil

PhD research grant (PHD02221)
AU$ 62,098
Neural and biomechanics mechanisms associated with changes in functional mobility after an intensive task-oriented training protocol in children and adolescents with cerebral palsy

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This research aims to provide an intensive intervention based on a task-oriented training directed to functional mobility, which is characterized by the individual’s ability to move anywhere to perform they daily activities. This intervention model is based on evidence showing that neuroplasticity is enhanced with intensive training. It is important to highlight that the intervention protocol will focus on each participant’s individual needs, reported by themselves, which also contributes for motor learning. In addition, we will investigate how the brain behaves during functional mobility activities and the quality of movements such as posture transfer, standing and gait, before and after the intervention. In this way, we can understand the effects of the training in functional mobility tasks and cerebral activity of these individuals. This is an innovative and unpublished study, as most studies focus on upper limb motor tasks and locomotion is a prevalent complain reported by individuals with cerebral palsy.

Miss Tracy Lau

University College London

PhD research grant (PHD02421)
AU$ 99,170
Understanding the Genetic Causes of Cerebral Palsy: A Collaborative project between Australia, United States and the UK to Improve Diagnosis and Develop New Pathways

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Cerebral palsy (CP) is a devastating life-long disorder considered by many to be an accident during pregnancy/birth. With a prevalence of over 1 in 500, the rising medical and socioeconomic burden of CP is considerable and remains neglected in comparison with many other disorders.

With advances in research, CP is being redefined, where evidence suggests CP is predominantly a group of rare genetic disorders. As genetic technology accelerates and the worldwide sharing of data, the frequency of defined CP patients is increasing, with evidence from Australia, Canada/USA and the UK of over a quarter of patients having rare monogenic causes. The majority of CP patients are not genetically investigated as the cause is often widely mislabelled as acquired that inhibits an exact diagnosis. Aetiology-based management and the possible use of gene-based drugs such as in spinal muscular atrophy will be an important advance to make in CP.

We propose to train a PhD student to investigate the Genomics England Research Environment and create a framework to share CP results between the UK, Australia and the USA/Canada in the following ways:

  1. Develop a framework for CP with an expansible patient-centred REDCap database to include the 100K and additional CP patients, and expand the recently produced Australian PanelApp.
  2. Collaborative bioinformatic analysis of CP to identify, i) coding, and ii) non-coding genome regions in the Genomics England Research Environment
  3. Integrate genome and transcriptome data in CP patients to enhance gene discovery.
  4. Data sharing to enhance the CP sequencing resource.