Past grant recipients

Parenting children with cerebral palsy and other neurodevelopmental disabilities is known to take a considerable toll on caregivers’ health and wellbeing. It is self-evident that promoting caregiver wellbeing is important for the best outcomes for all children, especially those facing life-long challenges. Whilst caregivers of Aboriginal and Torres Strait Islander children with a disability experience similar challenges to caregivers in other populations, the unique and diverse challenges experienced by Indigenous Australians need to be carefully considered within their cultural context of caregiving.

The 21st Century has seen significant advances in how we think about health and disability; family-centred services; and importantly culturally-responsive service provision. Consequently, we are changing the ways we try to work with families and communities to help them manage neurodevelopmental disabilities and navigate services within the cultural context of Aboriginal and Torres Strait Islanders ways of being, learning, knowing and doing.

Our research team has created ‘ENVISAGE: ENabling VISions And Growing Expectations’ – a program comprising five workshops for caregivers – which aims to empower parents, enhance family health and well-being, and build parent capacity and confidence. We propose that support provided to caregivers during their children’s early development will lead to positive long-term outcomes for families and communities.

This research project will partner with caregivers and families of Aboriginal and Torres Strait Islander children with cerebral palsy and other neurodisabilities, service providers and communities to (1) create a culturally-responsive ENVISAGE First Peoples program; (2) assess the acceptability, comprehensibility and usability of ENVISAGE First Peoples; (3) explore the impact of ENVISAGE First Peoples in a pre-post evaluation on parent-reported outcomes at baseline, post-intervention and at 3, 6 and 12 months after the program. These outcomes include measures of parents’ sense of competence; wellbeing; perceptions of family-centred and culturally-responsive service provision; and family empowerment.

Acquired brain injuries (ABIs) account for the overwhelming majority of movement disorders. Electrical stimulation is an established approach for the restoration of muscle movement, but thus far its utility as a therapy has been limited. There are two primary causes for this: poor selectivity in the activation of desired muscles, that may result in unwanted contractions; and the co-activation of efferent (e.g. motor) and afferent (e.g. sensory) fibres. In this ex-vivo study we focus upon solving these two key issues so that electrical stimulation can become a viable therapy in the treatment of ABIs. and in particular, cerebral palsy. Targeted stimulation or blocking of fibres that lead to rigidity and pain would alleviate these two major areas of unmet need in cerebral palsy.

Our team has shown that children and young people (CYP) with cerebral palsy (CP) from the poorest neighbourhoods in Australia are “doing it tough” – they are 50% more likely to have severe physical and intellectual disability compared to their peers from affluent neighbourhoods. Disadvantaged CYP at risk of disability are also half as likely to use a general practitioner and other health services than their more advantaged peers. This proven “inverse care law”, where disadvantaged CYP with conditions such as CP have less access to services despite greater need must be urgently addressed.

To provide effective child and family centred care for CYP with CP we need to ensure that we are supporting disadvantaged families and addressing their social as well as health priorities. In the USA, parents who are asked about the social determinants of health (e.g., poverty, discrimination, poor/unstable housing, educational barriers, social isolation, food insecurity, poor English proficiency, transportation) and referred to a social care navigator, who links them with social support services, have significantly reduced unmet social care needs and improved ratings of child health. This approach has potential benefit for CYP with CP living in Australia.

The aim of this project is to assess the feasibility and acceptability of a co-developed social care navigation pathway, EPIC-CP (Equity Pathways and Integrated Care in CP), using the robust design of a randomised controlled trial (RCT) in the paediatric rehabilitation services in NSW. EPIC-CP will support clinicians to identify disadvantaged CYP with CP aged 0-18 years and their families and link them through a social care navigation program to social care and support services. The ultimate aim of EPIC-CP is to improve quality of life, family wellbeing and parental/carer mental health for CYP with CP by addressing the social determinants of health (SDH).

Current project continues the recently set-up Cerebral Palsy register in Suriname, South America. Suriname is a low-and middle income country, where children with disabilities are underrepresented in society. Information on the disease burden, etiology and rehabilitation needs in children with CP is lacking. With support of the Research Foundation a Suriname CP Register was founded in 2018 as there is a need in Suriname to document the status-quo of CP, the burden of CP, the needs of the patient and families and the gaps in the rehabilitation services. This lack of data is a barrier to improving the management for youth with CP in an effective and sustainable manner.

The Suriname CP Register started to register children with CP using a hospital-based approach, since August 2018. Seventy-five children with CP have been registered since then (until the end of October 2019).

The Register encounters various issues such as slow registration pace due to lack of staff, and lack of awareness in society; limited efficiency and accuracy due to limited experience of medical professionals, and delayed detection due to absent early detection pathways.

Current project aims to improve the accuracy of the registered data, to improve earlier detection of children at risk for cerebral palsy, and to continuously increase the awareness on CP amongst the society.

The methods that will be used to achieve the aforementioned aims, will be expansion and continuous education of the registration team, training of NICU specialists in early detection. Current practices at the NICU and primary health care services are evaluated and strategies are developed to increase the early detection. Additionally, parents and caregivers of children with CP will be co-developers for the strategy on increasing awareness amongst society and parents.

Babies who have seizures in the first few days of life are at high risk of developing cerebral palsy. The more seizures they have, the higher the risk. Seizures can be difficult to diagnose, and a brain monitor is the best way to determine the frequency and duration of seizures. We use anticonvulsant medications to treat seizures in babies but don’t have enough information about the best way to use different drugs and doses to stop seizures. This study will use detailed information (collected in a recent, important Australian clinical trial) using brain monitors to create a model using mathematical techniques. We can then use this model to determine how to improve drug treatment for individual babies. If we improve treatment of seizures in newborn infants, we hope that we will reduce the risk of them going on to develop cerebral palsy or other manifestations of neonatal brain injury.

A recent review of assistive solutions for communication in children with cerebral palsy concluded that a major factor of technology abandonment is the “poor fit between the user’s abilities and the system’s characteristics” (Myrden, A., et al., JCN, 2014). This is not a surprise considering the challenges faced by people with cerebral palsy manifest in dramatically different ways in individuals and changes over time.

Existing assistive solutions for communication, learning, and play uses mass-produced switches, cameras, eye-trackers, etc. These approaches lack the personalization to interpret the unique capabilities of individuals, stands-out odd in social settings and often lead to user frustration and abandonment.

We propose a new approach to create wearable enabling technologies by replacing mass-production, i.e. “designed for many” with personal fabrication, i.e. “designed for me”.

We will employ a user-centered design (UCD) methodology where the design and development of the systems will be deeply rooted in the individual. This would include customization of the wearable device, its functionality and the form-factor (look and feel) to fit the unique abilities and needs of the individual through personal fabrication. These devices will blend in with users’ body (on-skin), clothing, and accessories and can be activated through subtle interventions, ideal for social settings. We will further develop personalized and responsive data interpretation platforms that evolve with the user, particularly through semi and unsupervised machine learning-based individualized artificial intelligence (AI) backends.

The contamination of water, particularly from agricultural chemicals, is increasing at an alarming rate globally. With a growing number of reports that agricultural contaminants such as nitrates are associated with preterm birth and reduced birth weight in Australia, Europe, Canada, and America, this global phenomenon requires urgent attention. This project will generate data for understanding the impact of contaminated drinking water on pregnant women – and in particular, on their baby’s brain development before and after birth.

We are applying the multidisciplinary expertise of an established international research collaboration to study how contaminated groundwater from an agricultural region in India leads to perinatal brain damage; however, these finding are transferable because of the wide-spread occurrence of nitrate contamination. We have preliminary data that brain damage is caused in offspring when pregnant mice drink contaminated water that is currently consumed by local farmers in the Berambadi catchment (Southern India). Because this water is also used for irrigation, contamination levels are increasing due to evapotranspiration and contaminants will be present in the drinking water for many decades to come.

We will extend our preliminary studies of exposure of pregnant mice to water from the Berambadi agricultural area to (i) an in-depth study of offspring brain and behaviour; (ii) determine if the offspring brains have an exaggerated response to injury like that occurring in preterm born infants; and (iii) test whether two cheap and safe neuroprotective agents, melatonin and creatine, offer protection from brain injury associated with exposure to contaminated water. Control water for this project is from a pristine forest in a national park nearby to the Berambadi agricultural.

Our 3 year project will offer training opportunities to PhD and honours students, strengthen our international consortium, and stimulate discussions of social health management programs protecting pregnant women and babies across the world.

Intrauterine growth restriction (IUGR) occurs when a baby fails to grow normally due to receiving inadequate nutrients while developing in the womb. Brain damage in these babies leads to life-long disabilities and up to a 30-fold risk in developing cerebral palsy (CP). Currently there is no treatment available to protect the IUGR newborn brain and therefore prevent or even reduce CP in these babies. While the development of strategies to reduce brain deficits in IUGR newborns have been proposed as in need of urgent research for several years, very few trials have been undertaken. Assessing long-term outcomes and thorough safety profiling of any treatment is necessary prior to administering therapies to vulnerable newborns.

This project seeks additional support to assess the safety, efficacy, and long-term outcomes of two treatments to protect the IUGR brain – placental stem cells and ibuprofen. We have strong evidence both of these treatments protect the IUGR newborn brain. However, we require definitive long-term safety data of these treatments before embarking on clinical trials in this vulnerable newborn population. We have the expertise to determine these long-term outcomes in this 2 year project.

Stem cells sourced from the healthy placenta are rich in protective factors for the newborn baby. We propose using unique patented stem cells, as an off the shelf preparation to protect the newborn brain. Ibuprofen is already commonly used in preterm babies to treat the heart condition patent ductus arteriosus. We have evidence that repurposing this cheap, easily accessible treatment may provide protection for the IUGR newborn brain.
While there is currently no treatment to protect the IUGR newborn brain, our project has the potential to provide direct protection and to improve outcomes for these children.

Having a stroke before or at birth is common, causing lifelong disability for millions. Such perinatal stroke accounts for most cases of unilateral cerebral palsy; paralysis on one side of the body. We use advanced brain imaging to explore how children’s brains develop after perinatal stroke (developmental plasticity). We use this knowledge to design new treatments to improve function and quality of life.

Despite proven success, imaging has always combined scans into groups, preventing us from understanding unique brain changes in each child. There is an urgent need for individualized methods to better understand brain plasticity in the youngest stroke survivors. Here, we combine our large experience in perinatal stroke with machine learning to create the personalized brain maps required to advance new treatments.

Every day in Australia approximately 15 infants are born very preterm (less than 32 weeks gestation). Of the 3,500 survivors each year, 1 in 12 will be diagnosed with cerebral palsy.

Any intervention that reduces the risk of cerebral palsy among preterm infants, particularly a simple, low-risk, low-cost intervention would have considerable social and economic benefits. Magnesium sulphate administered to mothers during preterm labour reduces the risk of cerebral palsy, but it is costly and approximately one third of mothers miss out on this treatment due to insufficient time for administration before birth. The mechanism of its neuroprotective effect is unknown, and our studies suggest sulphate is the protective agent. Preterm babies rapidly become sulphate deficient, and our research shows a trend between low blood sulphate level at 1 week of age and early signs of cerebral palsy at 3 months, suggesting that sulphate supplementation to the infant would prevent sulphate deficiency and cerebral palsy.

Before any future trials of sulphate supplementation in preterm infants are considered, we first need to complete our initial observational study to prove beyond doubt that low sulphate levels in preterm infants are associated with cerebral palsy, which requires recruiting a total of 1,505 preterm infants. In June 2019, thanks to the generosity of so many parents, we were excited to recruit our 1,100th baby into the SuPreme study. However, we must reach the required recruitment target of 1,505 infants and complete the assessments for cerebral palsy to scientifically prove the link between sulphate levels and cerebral palsy. Current funding of our study expires at the end of 2019, but Cerebral Palsy Alliance funding will enable us to complete the study, allowing us to then proceed to a clinical trial of sulphate supplementation, giving future families the hope of cerebral palsy prevention.

Selective dorsal rhizotomy (SDR) is a neurosurgery procedure to reduce spasticity in the legs. SDR typically involves permanently cutting a proportion of sensory nerve fibres near the lower spinal cord, and is a treatment option for some children with spastic diplegic cerebral palsy (CP) to reduce spasticity and improve mobility. Approximately 140 children are born with spastic diplegic CP each year in Australia, and SDR may be a suitable intervention for some of these children.

There is substantial community interest in SDR in Australia, but a lack of evidence-based and accessible information. As a result, news and social media are often dominant sources of information for families. Clinicians who work outside Australian centres that specialise in SDR often do not have up-to-date knowledge about the procedure.

This knowledge translation project will bridge this gap. The aim of this project is to create accessible resources based on best-available research evidence to support community and clinician decision-making. The resources will include information about selection, surgery and rehabilitation for SDR incorporating both outcomes and patient and family experience. The resources will be created using co-design principles and the success of the knowledge translation will be tested experimentally.

The project will occur over a two-year period supported by an experienced advisory committee. The advisory committee will include members with clinical and research expertise in SDR, parents/carers of children with CP, as well as a person with lived experience of CP and SDR.

As per the World Health Organisation, every year, globally, approximately 15 million babies (i.e. 1 in 10 babies) are born prematurely (before 37 weeks of pregnancy). Approximately one million children die from complications of prematurity and, of the survivors, many develop lifelong disability from injury to the developing brain. Prematurity is the leading cause of newborn death globally and second leading cause of death in children less than 5 years of age.

Premature babies are very fragile and vulnerable especially babies who are born extremely premature (that is before 29 weeks gestation). They are at high-risk of developing disability in childhood, including cerebral palsy. Preventing brain injury at birth and in the first few days after birth will improve outcomes for these infants. Whilst CP rates are declining in this group (2018 Australian Cerebral Palsy register), more studies aimed at preventing brain injury at birth and in the first few days after birth are needed.

This study aims to investigate whether targeting brain oxygenation in the first 5 days of life in extremely premature babies using a pragmatic evidence-based guideline, compared to current clinical management, reduces mortality and/or improves long term neurodevelopmental outcome. A pilot Randomised Controlled Trial will determine the feasibility, safety and compliance of following a clinical guideline to target brain oxygenation and provide data for final numbers required for a multi-site randomised controlled trial. We hypothesise, that by targeting brain oxygen levels in an extremely premature baby, there will be reduced brain injury in the newborn period, leading to improved survival and improved neuro-developmental outcomes.

Cerebral palsy (CP) is the most common movement disorder of children, affecting 1 in 700. Children and adults living with CP are often additionally affected by other neurological conditions such as chronic pain, epilepsy, autism spectrum disorder and learning and memory disorders. At present, it is difficult to predict long-term disease outcomes from birth, or which children will be affected by CP when they encounter known CP risk factors during their early development.

Our research has shown that approximately one quarter of CP is caused by rare genetic changes. It is also likely that combinations of genetic variants that are more common in the general population could confer a high risk for CP. Similar combined genetic effects (polygenic risks) are known to contribute to disorders that overlap with CP.

We propose to measure the genetic risk for CP using existing population genetics studies of known CP risk factors.

The variations between individuals contribute to how we appear, how we think and how we feel. Some of this genetic information encodes benign traits like how tall we are but some also confers disease risk. This international, 18 month project involves 746 consented individuals living with CP from Canada and Australia. Using data from existing genetic studies of individual CP risk factors, including premature birth, low birth weight, epilepsy, autism spectrum disorder and cognitive ability we shall test if these are also associated with genetic risk for CP.

The polygenic risk score may be used as a diagnostic tool to advise families of the risk of a child developing CP when other known risk factors have occurred. The risk score may explain clinical differences in families with multiple individuals affected by CP or related neurological disorders, help with family planning, guide clinical care and provide evidence for daily living assistance requirements.

Services for children with cerebral palsy (CP) and their primary caregivers are scarce in resource poor settings. Over 90% of children with CP lives in low- and middle-income countries (LMICs) with limited or no access to early intervention and rehabilitation services.

Data from the Bangladesh CP Register (BCPR) study suggest that diagnosis of CP is delayed in rural Bangladesh and majority of the children with CP in rural settings do not have access to early intervention and rehabilitation services. Major barriers to service uptakes are unavailability of the services, lack of awareness and resources (97% of the families with children with CP living below the poverty line). Moreover, the limited available services are concentrated in the major cities.

We are proposing a community-based participatory research to establish a Sustainable Model of eARly Intervention and Tele-rehabilitation for children with Cerebral Palsy in rural Bangladesh (or SMART CP service delivery model). SMART CP model will have three components; i) rural Key Informants (KIs – trained village volunteers) and CP mothers groups (mPower group) will work within their communities to facilitate early diagnosis and intervention, ii) sub-district level SMART CP service centres (led by a Diploma Physiotherapist, Community Rehabilitation Worker and Community Mobilizer) to cater for the needs of children identified with suspected CP by the KIs and mPower groups, and (iii) a tele-rehabilitation service (including medical consultancy, physiotherapy, speech and language therapy and nutritional counselling) to guide and oversee the services provided by the SMART CP service centres (specialised support service).

This study aims to examine the efficacy of this service delivery model (i.e. SMART CP) with a pragmatic approach which in turn will develop the national infrastructure for rural/sub-district level services and referral system for children with CP in rural Bangladesh.

Implementation of evidence-based guidelines facilitates early diagnosis and intervention, which in turn optimize outcomes for children with CP. CP registers contain robust data to guide the development of programs and services for children with CP and their families and monitor trends in outcome. Through our previous work at the National Children’s Hospital in Hanoi Vietnam, we established hospital-based surveillance of children with CP and collected data on over 700 newly diagnosed cases in six months. We confirmed a high burden and severity of CP. Often, CP was associated with preventable risk factors; poor nutrition; limited access to diagnostic tools and delayed diagnosis; and poor access to evidence-based interventions and to mobility devices. We identified the need for: local clinician training and capacity building to enable early diagnosis and early use of evidence-based interventions; and maintenance of our established surveillance mechanism and CP register.

We are an experienced multidisciplinary team including paediatricians, medical educations and public health professionals with a strong track record in research in Vietnam for over 10 years. We have established a collaborative partnership between the Children’s Hospital at Westmead and the National Children’s Hospital in Hanoi; the University of Sydney and the Hanoi Medical University.

Our aims are to 1) build capacity of key professionals for best practice through training in evidence-based diagnosis and intervention, including in use of the General Movements Assessment (GMA) for the first time in Vietnam; and establish strong interdisciplinary referral pathways, 2) implement established evidence based guidelines, 3) collect robust surveillance data for the CP register to monitor trends in diagnosis and outcomes.

Information about children who have SDR from around Australia and overseas has been recorded in the Australian SDR Research Registry (SDR-AUS Research Registry). This Registry has helped improve understanding about which children are selected for SDR and their outcomes up to two years following surgery.

The project will include the following steps:

1. Recruitment of children with cerebral palsy undergoing SDR in Australia and overseas.
2. Collection and analysis of outcome data including pain and quality of life measures, adverse health outcomes and need for further spasticity and orthopaedic intervention.

Outcome data to be used for knowledge translation activities.

The importance of a genomic contribution to cerebral palsy is increasingly recognised. This application is to fund a Postdoctoral Fellow to Coordinate Clinical Genomic work in Cerebral Palsy across Australia. Funds will develop programs across all states, write grants and ethics proposals and work with the existing services to facilitate their participation in the scientific work taking place. Although Australia was instrumental in delineating the Genomic contributions to Cerebral Palsy, our advantage in this field is no longer as strong. Our intention is for Australia to remain at the forefront of CP Genomics Research and its integration into routine care. Dedicating a Postdoctoral Fellow to this role will assist this, and no doubt bring new researchers into the CP field.

Children diagnosed with neurodevelopmental disorders (NDDs) including Cerebral Palsy (CP) generally present with a complex set of co-occurring conditions, symptoms and difficulties. Current methods of assessing and categorising NDDs requires parents/caregivers of children with multiple difficulties to seek separate assessments using different questionnaires and assessment schedules from different services and systems (e.g. developmental/paediatric, neurological, mental health). This is an onerous process, with differing tools focusing on different diagnostic conditions and symptoms (e.g. CP, autism, global developmental delay, ADHD, anxiety, etc.). This process is neither time efficient nor comprehensive. Clinicians utilize an arbitrary approach to assessment tool selection, and relevant symptomatic domains may be omitted or overlooked to minimize the burden for parents/caregivers. This results in fragmented approach to diagnostic assessment, and duplication in cost, time, effort, and resources. A streamlined, comprehensive neurodevelopmental assessment tool is required to achieve comprehensive assessments of phenotype (physical, cognitive, behavioural, and medical), to plan for appropriate and personalized supports.

The primary aim is to design with stakeholders (including people with CP, parents/caregivers and service providers), a user-friendly assessment inventory (Neurodevelopmental Assessment Scale-NAS), that systematically screens for signs and symptoms of all NDDs. This will enable clinicians and parents/caregivers to easily assess neurodevelopmental differences as they emerge and identify the right care at the right time and setting.
A secondary aim is to identify subgroups based on clinical and behavioural symptoms, to match appropriate integrated interventions to a child’s unique clinical profile.

The NAS will facilitate a trans-diagnostic approach to identifying, and most importantly, prioritising interventions and supports for children with a NDD including CP. The ultimate objective of this research is the delivery of truly personalised care, so each child receives intervention and support services in structured and individualized ways at the earliest opportunity, to derive the most benefit from intervention to achieve optimal outcomes.

Cerebral palsy is the most common neurodevelopmental disorder of motor function affecting 2-3/1000 children worldwide (1) and 1.5/1000 live births in Australia (CP register 2018). Whilst prematurity, pre and perinatal stroke, infection and hypoxic-ischaemic injury are well-recognised risk factors for cerebral palsy (CP), 30-50% of children with CP may lack traditional risk factors (2, 3). Increasingly, pathogenic genetic variations have increasingly been found to contribute to cerebral palsy pathogenesis (4-13). Expert medical care in developed countries is increasingly embracing genomics. Appropriate genomic investigation can improve our understanding of the pathological basis of disease, assist in prognostication, focus management and will lead to personalised medicine (14, 15). For example, a genetic diagnosis can result in specific treatments such as dopamine replacement or deep brain stimulation, and we hope in the future, gene therapy.

Despite this, there is no consensus on which children with CP should have genetic testing. A recent genomics study performed whole exome sequencing on 250 children including 157 (63%) with idiopathic CP, 84 (34%) with CP of known environmental insult and 9 (4%) unclassified CP found up to 14% of the cases contained damaging genomic variants (4). Genetic aetiology is a significant contributor to CP and clinicians need guidance on which children with CP should be tested. In addition to this, exome sequencing is not currently funded for people with CP through Medicare.

Through 5 projects from a team of geneticists, neurologists, CP experts and scientists, we will develop a tool (the GENE-CP score) to determine which children should be prioritised for testing. We will also explore the psychosocial impacts of genetic testing, and through structured methods, determine the benefits and utility of genetic testing.

Extremely preterm and asphyxiated term infants have significant risks of death or permanent disability, including cerebral palsy (nearly 50%). Those surviving infants have complex, expensive and long stays in intensive care.

This project aims to reduce the risks of death and permanent neurological injury, including cerebral palsy, in critically ill newborn infants by predicting impending clinical deterioration using innovative artificial intelligence systems. With computer predictive modelling of physiological data from critically ill newborn babies we hope will better identify babies at risk of brain injury and cerebral palsy.

Seven years ago intensive care clinicians at the Westmead neonatal unit developed a unique massive data storage system designed to collect and save all physiological waveforms and data such as blood pressure, heart rate, breathing rate, oxygen levels in tissues and life support system data in preterm newborns. The database now contains over 1.2 million patient hours.

In the first year of this project this physiological data will analysed and linked to the database of the unit’s outcome data. In the second year we will develop AI and machine learning algorithms to enable doctors and nurses to recognize currently hidden patterns of illness.

A staged expansion of the our system is planned at the Westmead campus including the Children’s Hospital Westmead with later stage expansion across New South Wales neonatal intensive care units.

The future includes fully virtual training for staff based on predicted outcomes from learning decision points similar to the aircraft flight simulators.

We will then develop open access software to share with all newborn intensive care units in Australia to improve outcomes of critically ill newborn babies who are at risk of cerebral palsy. All families will feel involved as the machine learning system will improve as more patients complete.

A high proportion of children with Cerebral Palsy (CP) show significant social impairments. Despite this, no study has developed systematic methods to identify impairments or track social development in young infants with CP. This means that there is no knowledge to guide clinical practices about how to detect, support or intervene for social development early in life for children with CP.

This delay in detection represents a significant missed opportunity for two reasons. First, there is evidence that early intervention provides the best opportunity to improve social skills later in life. Second, social development predicts lifelong functional outcomes, such as employment, the quality of future friendships and intimate relationships, and mental well-being. The failure to address social development can have cascading negative effects on a range of health and well-being outcomes.

The aim of this study is to provide the first data to identify social impairments early in life and track social development in children with CP. Assessment of social reciprocity and skills will be taken at approximately four months of age and at six-month intervals after that until the child reaches two years of age.

A comprehensive social development and skills assessment will also be taken at two years of age to enable us to map early life markers onto more well-established social development and developmental outcomes to assess for the diagnosis of Autism Spectrum Disorder (ASD).

Results will provide the first longitudinal study to demonstrate social development benchmarks for CP that can be used in clinical practices to identify early life social impairment and predict longer-term outcomes. They will open new opportunities for next generation early interventions that target early life social development, with the potential to alter lifelong social skills and to improve life potential.

Moderate to severe birth asphyxia is the commonest cause of brain injury and cerebral palsy for babies born at or near term, affecting 3 to 5 per 1000 live births. Neonatal seizures are a clear indicator of moderate to severe brain injury. There is good evidence from animal laboratory studies and human observational studies that in babies with birth asphyxia, seizures may make brain injury worse, increasing the risk of cerebral palsy and other developmental problems. Therapeutic cooling is the only proven therapy to improve outcomes for these infants, but a significant number of infants affected will be left with brain injury. Prevention of seizures following birth asphyxia is therefore paramount to protecting the newborn brain. The medication currently and most commonly used to treat newborn seizures (phenobarbitone) is both relatively ineffective (only eliminating half of seizures) and may also be damaging to the brain. Our team have identified a new anti-seizure medication – ganaxolone – that appears to be both safer and more effective than phenobarbitone in the control of newborn seizures.

We will conduct a randomised controlled trial in term, or near-term, infants with birth asphyxia comparing phenobarbitone to ganaxolone as a first line drug for seizures, to determine safety and efficacy. Babies enrolled into this study, from a number of collaborating newborn intensive care units around Australia, will be followed until they are two years of age, when they will receive a full developmental assessment. Clinical evidence from older infants and children show that ganaxolone is safe and effectively reduces seizures and current trials are underway in Australia. Our trial will be a world-first to specifically examine whether ganaxolone is superior to current therapy with phenobarbitone for neonatal seizures and has the potential to change clinical practice and reduce the risk of developing CP following birth asphyxia.

Cerebral Palsy (CP) is one of the leading causes of childhood disability, with a substantial high burden in low-and-middle-income countries (LMICs). However, to date the majority of evidence describing CP epidemiology are based on HIC context. In 2018, the Global LMIC CP register (GLM-CPR) was established to support a common platform for LMICs and share country-specific data on CP utilizing harmonized protocol. The platform has successfully established CP registries in several LMICs. Preliminary findings of GLM-CPR have facilitated researchers to identify preventable risk factors in selected LMICs, crucial for reducing the burden of CP. At the same time the findings indicated a dire need to work on preventive strategies, capacity development of service providers and global networking to maximize cost-effective early detection, intervention and rehabilitation program for children with CP in LMICs.

The study aims to continue the GLM-CPR activities to (i) Support new and emerging CP registers from LMICs to establish their own CP Register through a data sharing agreement, (ii) Collect data on burden, severity and aetiological risk factors of CP in LMICs to inform prevention strategies, (iii) Monitor the impact on disability rates of the increasing survival of more premature infants in LMIC to inform prevention strategies, (iv) Develop harmonized protocols for prospective larger studies on priority research areas; a) CP early diagnosis by implementing international guidelines; b) Outcome trials for community based early interventions for children with CP; and c) Multicentre intervention trials for the prevention of CP in LMICs; and v). Capacity building for project implementation, research, service delivery and advocacy through ongoing and prospective collaborations.

Eminent scientists agree that stem cells are a scientifically plausible cure for cerebral palsy and there is growing evidence that stem cell therapies for those with or at risk of cerebral palsy is safe and beneficial. Moreover, stem cell research is a key priority area for those with cerebral palsy and their families.

To ensure that Australia doesn’t “fall behind” in the fast-paced field of stem cells for cerebral palsy, a multifaceted approach should be implemented to support up-and-coming research talent.

This project aim to engage the researcher in a comprehensive 2-year postdoctoral knowledge exchange consisting of international travel and activities that support and promote key areas of:

• Evidence-based stem cell science
• Collaboration with leading global research teams
• Ground-breaking translational research and clinical trials
• Australian policy change and advocacy
• Research dissemination and communication

Up to half of adults with cerebral palsy (CP) will develop thin bones (osteoporosis) and broken bones which can severely decrease mobility and quality of life. Concerningly, up to 75% of adults with CP will lose their ability to mobilise and many will need assistive devices. Therefore preserving bone health in adults with CP is key to maintaining independence, but there are no guidelines for doctors and caregivers.

This project aims to provide the first adolescent and adult guidelines for osteoporosis in CP. There will be a specific focus on how best to transition care from child to adult services to ensure bone health is maintained.

Advances in neonatal medicine mean that more preterm babies are surviving than ever before. However, premature birth is associated with long-term complications, including a high risk of developmental disorders in childhood, like cerebral palsy (CP).

The highest risk (up to 10%) of severe preterm brain injury and CP is in extremely premature/ extremely low birth weight babies (less than 28 weeks gestation/ less than 1000 grams at birth). Currently, there is no effective treatment to prevent or treat preterm brain injury or CP. This project intends to undertake a translational study evaluating the capacity of the (at risk) baby’s own cord blood derived stem cells to prevent preterm brain injury.

The studies will be critical to evaluate the feasibility and safety of future cord blood stem cell therapies for babies with preterm brain injury. This is a world first innovation and potential game changer in our quest for therapies for preterm brain injury and cerebral palsy.

Up to 92% of preterm babies struggle to breathe at birth and require respiratory support to survive. Whilst life-saving, this respiratory support injures their immature brains leading to life-long consequences including cerebral palsy. In addition, 40-70% of preterm babies are exposed to infection and inflammation in the womb, and this further increases the requirement for respiratory support and increases the risk and severity of perinatal brain injury.

While research to date has focused on improving respiratory support techniques, a major issue has been overlooked. That is, understanding why these babies cannot breathe in the first place. This project focuses on this critical aspect of breathing.
We aim to demonstrate that targeting Prostaglandin E2 in the fetus will reduce the need for respiratory support at birth and minimise brain injury in preterm babies.

The Prechtl General Movements Assessment (GMA) is a key tool in the early diagnosis of infants who are at high risk of later cerebral palsy (CP). However, the GMA is not always easily accessible due to clinical resource constraints or social/geographical isolation, and has limited ability to predict the severity, type and/or topography of CP. A novel smartphone app, Baby Moves, which allows parents/carers to record and upload videos of their infants’ movements, shows promising uptake from families of infants born extremely premature (EP, <28 weeks’ gestational age) and/or extremely low birthweight (ELBW, <1000 g): a population at high risk of CP compared with the general population. The Baby Moves app has been used by 155 families of infants born EP/ELBW in the State of Victoria born over a 12-month period from the 1st of April, 2016.

This project aims to assess the predictive ability of the GMA, scored from videos obtained from families of infants born EP/ELBW for the outcome of CP diagnosed at 2 years’ corrected age. Furthermore, the relationships between the Motor Optimality Score (MOS), a detailed, semi-quantitative assessment of infant postures, and the severity of CP will be analysed in the same EP/ELBW population to determine if the MOS can provide an earlier picture of the severity, type and topography that eventuates in infants born EP/ELBW, and may also identify those with non-CP causes of motor impairment.

Cerebral palsy (CP) is the most common childhood disorder and is due to damage in the developing brain. Impaired movement skills are a significant component of this disorder resulting in life-long physical disability. We are now in the very unique position where we can diagnose CP early at 3 months age with 98% accuracy. Early diagnosis is important as we now know that the brain is “neuroplastic”, with some ability to compensate for brain injury and may benefit from early therapy, especially over the first 2 years of life when neuroplasticity is greatest. Infants typically start to be treated following diagnosis at 3 months of age, with promising research emerging that infant’s movement or motor skills improve because of this.

But what if we started therapeutic interventions even earlier, before 3 months of age? It is possible that 3 months age may be too late to commence motor interventions, with services needing to start much earlier to fully harness neuroplasticity. Limited research however exists for the benefit and content of motor interventions prior to 3 months age. We now have ways to identify infants at risk and we need to know whether we should be starting treatment as early as possible. Our own unpublished data on 8 infants indicated better than expected motor outcomes in infants at high risk of CP using this approach.

The aim of this study, the Best Start Trial, is to determine whether parent-delivered physiotherapy interventions initiated up to 4-5 months earlier than typically commenced (3 months age), will improve motor outcomes at 4, 12- and 24-month time points in preterm/term infants at risk of CP or motor delay.

Cerebral palsy (CP), the most common cause of childhood disability, is estimated to be nearly 5 to 10 times more prevalent in low and middle-income countries (LMIC). Yet the exact burden of CP in LMICs is largely unknown and the causal pathway is also likely to be different from high-income countries.

Early diagnostic and intervention techniques designed for developed countries may not be appropriate for LMICs. Moreover, diagnosis is delayed and this poses a complex challenge in program development as early diagnosis is the key to early intervention.

This study will i) describe the burden of CP in a typical LMIC, Bangladesh, through a population based register ii) assess the use of a novel method for early diagnosis and iii) assess the outcome of a parents led early intervention and rehabilitation program for children with CP, all of which is essential for evidence based program development in LMIC settings.

Cerebral palsy (CP) impacts the way a person can control and coordinate their muscles, including muscles of the mouth and throat, which can impact the safety and efficiency of feeding and swallowing. This is called dysphagia. Dysphagia affects 85% of children with cerebral palsy (CP) and can lead to a range of secondary impairments including failure to thrive, malnutrition, which can further impair neurological and musculoskeletal development, and it can result in aspiration pneumonia; a leading cause of death in CP. A strong need, therefore, exists for evidence-based feeding interventions. To date, the quality of evidence is insufficient to make judgements on best practice in treating dysphagia in this population.

Motor learning and neural plasticity evidence proposes that intense, early practise of the desired skill in motivating, functional activities have the best results. Recent research is showing that motor learning interventions are having positive results for advancing gross and fine motor skills in infants with cerebral palsy, and speech in children with apraxia of speech and swallowing with adults who have had a stroke.

This pilot randomised controlled trial study compares Intensive Early Adaptive Treatment (I-EAT) program to standard care to understand whether oral feeding difficulties, reliance on compensatory strategies and secondary impairments can be reduced in infants with CP. We will establish the feasibility and acceptability of both interventions in addition to monitoring their impact on oral intake, oral feeding efficiency, feeding and swallowing skills, health, growth and family stress.
Alongside the intervention arm of this study, we are determining the feasibility of three new infant feeding assessments; ultrasound, fibreoptic endoscopic evaluation of swallowing and the Dysphagia Disorders Survey for Infants.

We are in the data collection phase of this study after commencing recruitment in February 2019. We aim to recruit 70 infants by 2022.

Small babies have twice the likelihood of needing an emergency caesarean in labour for fetal distress or consequences such as cerebral palsy or death can occur. This is often because the placenta is functioning poorly, limiting the oxygen and nutrient supply to the baby. Sildenafil citrate, or ViagraTM, increases blood flow to the placenta.

This 3-year trial will investigate if sildenafil can be safely used to reduce distress in labour for small babies, and their need for caesarean birth.

Advances in technology and clinical management ensure babies are more likely to survive premature delivery and admission to the neonatal unit with fewer severe deficits. Despite increased survival rates the effects of prematurity and admission to the neonatal setting can last a lifetime. With known long term impacts for neonatal intensive care unit (NICU) graduates. Identifying approaches that can buffer against the effects of the neonatal intensive care setting is necessary.

This project aims to identify distinct cognitive markers of executive dysfunction in ADHD, ASD, FASD and Tourette’s Syndrome in children. These include abilities such as working memory and attention abilities. This will allow for increased understanding on how early interventions can be tailored to specific developmental disorders in children and as well as those children that present with comorbidities. This will allow for enhanced understanding on how specific cognitive functions are impacted.

Fetal Growth Restriction (FGR) is a common complication of pregnancy, present in up to 9% of pregnancies in Australia. FGR describes the fetus that has failed to grow to its full potential and is associated with learning and behavioural deficits later in life and motor dysfunction including cerebral palsy. FGR is largely caused by poor placental function, termed placental insufficiency, restricting the amount of oxygen and nutrient supply to the developing fetus. Chronic hypoxia describes a period of prolonged lack of oxygen, which has profound detrimental effects on the growing fetal brain, with FGR infants at high risk of brain injury and cerebral palsy.

Pre-clinical data and human MRI studies show FGR disrupts connectivity of the major cells of the brain, the neurons. Fundamentally, altered brain connectivity results in a reduction in cell-to-cell connections between neurons. There are currently no neuroprotective therapies available for pregnancies with suspected FGR. For the development of a targeted therapy, it is integral we understand the progression of fetal brain injury in FGR. This project aims to characterise the progression of brain injury in FGR, not done before, by examining the normal and abnormal development of neurons in ovine pregnancies affected by placental insufficiency and subsequent FGR.

Lactoferrin is a protein that derives its name from the high concentrations found in breastmilk. Pilot evidence suggests antenatal administration of lactoferrin will be neuroprotective to the brain of growth restricted offspring. We propose that a simple dietary supplementation of lactoferrin given to mum during pregnancy will normalise brain development in FGR fetuses and reduce long-term neurological deficits associated with FGR. As a therapy, lactoferrin is simple to administer, safe, inexpensive and could be readily adopted into routine clinical care anywhere in the world. This project will examine whether antenatal treatment of lactoferrin improves brain connectivity in FGR.

Cerebral palsy (CP), the most common cause of childhood disability, is estimated to be nearly 5 to 10 times more prevalent in low and middle-income countries (LMIC). Yet the exact burden of CP in LMICs is largely unknown and the causal pathway is also likely to be different from high-income countries.

Early diagnostic and intervention techniques designed for developed countries may not be appropriate for LMICs. Moreover, diagnosis is delayed and this poses a complex challenge in program development as early diagnosis is the key to early intervention.

This study will i) describe the burden of CP in a typical LMIC, Bangladesh, through a population based register ii) assess the use of a novel method for early diagnosis and iii) assess the outcome of a parents led early intervention and rehabilitation program for children with CP, all of which is essential for evidence based program development in LMIC settings.

Cerebral palsy (CP) impacts the way a person can control and coordinate their muscles, including muscles of the mouth and throat, which can impact the safety and efficiency of feeding and swallowing. This is called dysphagia. Dysphagia affects 85% of children with cerebral palsy (CP) and can lead to a range of secondary impairments including failure to thrive, malnutrition, which can further impair neurological and musculoskeletal development, and it can result in aspiration pneumonia; a leading cause of death in CP. A strong need, therefore, exists for evidence-based feeding interventions. To date, the quality of evidence is insufficient to make judgements on best practice in treating dysphagia in this population.

Motor learning and neural plasticity evidence proposes that intense, early practise of the desired skill in motivating, functional activities have the best results. Recent research is showing that motor learning interventions are having positive results for advancing gross and fine motor skills in infants with cerebral palsy, and speech in children with apraxia of speech and swallowing with adults who have had a stroke.

This pilot randomised controlled trial study compares Intensive Early Adaptive Treatment (I-EAT) program to standard care to understand whether oral feeding difficulties, reliance on compensatory strategies and secondary impairments can be reduced in infants with CP. We will establish the feasibility and acceptability of both interventions in addition to monitoring their impact on oral intake, oral feeding efficiency, feeding and swallowing skills, health, growth and family stress.

Alongside the intervention arm of this study, we are determining the feasibility of three new infant feeding assessments; ultrasound, fibreoptic endoscopic evaluation of swallowing and the Dysphagia Disorders Survey for Infants.

We are in the data collection phase of this study after commencing recruitment in February 2019. We aim to recruit 70 infants by 2022.

Findings from our research (i.e. Bangladesh Cerebral Palsy Register (BCPR)) suggest that the diagnosis of CP is delayed in rural Bangladesh compared to high income countries (5.2 years vs. 17 months in Australia).

Currently I am working as the Research Physiotherapist at CSF Global Bangladesh and enrolled into a PhD program through CQ University, Australia. My research and clinical practice are aimed to foster early diagnosis of CP in rural and remote settings of Low and Middle Income Countries (LMICs) like Bangladesh.

Training on GMA will be a great learning opportunity for me to ensure early diagnosis and intervention for children with CP in rural Bangladesh.

As a Co-Investigator and only local neurodevelopmental paediatrician on the Cerebral Palsy Alliance Research Foundation funded project “Neonatal resuscitation and impact on newborn survival, fresh stillbirth and rates of cerebral palsy and adverse neurodevelopmental outcome,” it is imperative that I be formally trained the Prechtl’s General Movements Assessment.

The GMA is critical to validate the feasibility and acceptability of this tool in this low-resourced context. This training will improve my skills in the early detection of cerebral palsy and improve early detection of and intervention for cerebral palsy in Zimbabwe, both clinically and in the research context.

I am an experienced Paediatrician and Head of the Rehabilitation Department at the National Children’s Hospital (NCH). We recently collected data on 800 children newly diagnosed cases of CP in our unit, over a 5 month period, most of whom were under 2 years. There’s evident need for early recognition to enable early intervention and to optimise clinical outcomes in Vietnam where we are seeing a high burden of CP.

We’re interested in introducing the GMs assessment and evaluating it’s reliability and utility in Vietnam, and this opportunity will improve our department of rehabilitation in Hanoi.

I am an experienced physiotherapist and the Head Physiotherapist of the Rehabilitation Department at the National Children’s Hospital (NCH), Hanoi, Vietnam.

There is evident need for early diagnosis to enable early intervention and to optimise clinical outcomes in Vietnam where we are observing a high burden of CP. This course would provide me with invaluable skills to implement in our department in Hanoi.

Youth with disabilities, such as cerebral palsy, may experience challenges during the transition from pediatric to adult health care when they need to learn how to navigate new health care services.

My doctoral studies aims to understand the experiences of siblings with a brother or sister with a disability who are preparing for health care transition. My studies used an integrated knowledge translation approach to engage with siblings as research partners.

I developed the Sibling Youth Advisory Council (SibYAC) comprised of four young adults who have a brother or sister with a disability. I want to share my experiences from collaborating with the SibYAC, and will submit an oral presentation abstract at the European Academy of Childhood Disability Conference 2020 in Poznan, Poland. Then, I plan to spend a week in Utrecht, Netherlands to learn from the PERRIN PiP Study Group about strategies to engage with youth with cerebral palsy.

I am the senior physiotherapist for our neonatal unit at Wollongong Hospital. I have worked at Wollongong Hospital in paediatrics in the senior role for over 20 years. We have babies at our unit who are 32 weeks and above in age. Many of our babies are transferred to our unit from other tertiary hospitals. We also have a very high number of babies with neonatal abstinence syndrome at our unit.

I do not have current training in General Movements Assessment and would like to attend the basic training so I can be an informed and valuable team member for our service and to better support parents when collecting these video assessments of babies on our unit. I would really appreciate the opportunity to attend training so that I can play an integral role in the early identification of babies at high risk of neurological dysfunction in our community.

I am a senior paediatric physiotherapist at Blacktown Mt Druitt Hospitals (BTMD) and have been seeking a chance to learn the GMA since the establishment of the CP guidelines in 2017, which noted its effectiveness in identifying very young infants at risk of CP.

I work primarily with newborns babies, born prematurely and at term. The ability to identify babies who are showing early signs of delayed development is crucial so that families can access early intervention to optimise developmental outcomes.

The current assessment tools I use are effective in identifying early signs of delayed development, but only in babies >6 months (e.g HINE). Undertaking training in the GMA will allow me to identify babies earlier (potentially 0-5m), which would allow earlier referrals and better health outcomes.

This 8 day symposium will be held in Kolkata, India and unites multiple South Asian Association for Regional Cooperation (SAARC) nations in an evidence-based disability strategy which implements the first international clinical practice guideline (Novak 2017).

The symposium invites 40 health professionals from India, Bangladesh, Bhutan, Nepal, Vietnam, Thailand, Sri Lanka and Pakistan.

We aim to financially support up to 20 participants to attend as funded scholarships. We will upskill local teams in early detection methods for cerebral palsy including General Movements assessment and Hammersmith Infant Neurological Evaluation and to foster research collaborations implementing early intervention programs such as the learning through everyday activities with parents (LEAP-CP) program. Supporting travel scholarships for health professionals in low-middle income countries will dramatically increase the accessibility of this specialist training. Candidates will be selected for leadership, academic research capacity and/or ability to implement early detection and early intervention programs in their countries/regions.

The training grant will allow travel to Nepal in collaboration with the Nepal Physiotherapy Association and Kathmandu University to educate local health professionals, including doctors and physiotherapists, on how to implement early detection and early intervention for infants with cerebral palsy.

The training will involve practical workshops based upon international guidelines on best practice to accurately detect cerebral palsy (CP) in early infancy, along with early intervention strategies to maximise development of the child and their family. The training will be available to health professionals throughout Nepal, who will be given tools to implement changes into their own practice.

Resources for funding training are limited in Nepal and this training would not be possible without the support of the Cerebral Palsy Alliance Research Foundation.

The Centre for the Rehabilitation of the Paralysed (CRP), in Bangladesh, provides rehabilitation for children with cerebral palsy. Learnings from a sabbatical of our colleague, highlighted the potential value of a team of Australian therapists providing training in goal directed therapy at CRP. In collaboration with the team at CRP, a qualitative research project was developed. We are requesting financial support for return flights/accommodation to Bangladesh to conduct two phases of the project.

This will be the third annual conference focusing on early detection and intervention of cerebral palsy. It includes workshops led by world renowned clinicians and researchers, and helps attendees turn theoretical knowledge into practice. The conference features debates from experts on state-of-the-art techniques and therapies.

I believe this conference will help strengthen our organization’s Detection and Early Intervention program, which currently serves 150 children aged 0 to 6 each year. At APAC, we seek to be an organization of excellence in the care of people with cerebral palsy, and to keep up-to-date with cutting-edge techniques to provide comprehensive services to all our beneficiaries.

As the Chief of Rehabilitation Medicine, I have put special emphasis on Early Detection, as I have seen first-hand the positive impact it might have in preventing or reducing long-term damage.

Following conference will be attended: “Implementation Of Early Detection And Intervention For Cerebral Palsy Conference”.

Due to my work in the Suriname CP Register, it is important to continuously increase knowledge and to be able to collaborate with specialists in the field of early detection and intervention.

A GMA training will be followed prior to the conference in pre-conference seminars.

The Centre for the Rehabilitation of the Paralysed (CRP), in Bangladesh, provides rehabilitation for children with cerebral palsy.

Learnings from a sabbatical of our colleague, highlighted the potential value of a team of Australian therapists providing training in goal directed therapy at CRP. In collaboration with the team at CRP, a qualitative research project was developed. We are requesting financial support for return flights/accommodation to Bangladesh to conduct two phases of the project.

Phase one: Jan 2020. Aim- To explore current therapy practices and gain in-depth understanding of the cultural and contextual factors influencing therapist choice of intervention and child and family goals in Bangladesh. Method- qualitative research, alongside Bangladeshi researchers, using observational and in-depth interviews.

Phase Two: Nov 2020. Implementation of training. Data collected in phase one is required to ensure that proposed training is collaborative, culturally sensitive and responsive to the real-life needs of children, families and therapists.

This will be the third annual conference focusing on early detection and intervention of cerebral palsy. It includes workshops led by world renowned clinicians and researchers, and helps attendees turn theoretical knowledge into practice. The conference features debates from experts on state-of-the-art techniques and therapies.

I believe this conference will help strengthen our organization’s Detection and Early Intervention program, which currently serves 150 children aged 0 to 6 each year. At APAC, we seek to be an organization of excellence in the care of people with cerebral palsy, and to keep up-to-date with cutting-edge techniques to provide comprehensive services to all our beneficiaries.

Worldwide, 700,000 newborns die annually because they do not receive enough oxygen during birth. Many more newborns develop brain injury leading to cerebral palsy or intellectual impairment. The vast majority are born in resource-limited countries where few treatments are currently available.

During my PhD I am working on ways to improve newborn resuscitation. This includes studies on providing help breathing while still attached to the umbilical cord to maintain the lifeline of oxygen coming from the placenta. Simple improvements in the sequence of resuscitation may help improve newborn outcomes.

This grant will allow me to work with my partners in Kenya to learn about the challenges for providing high quality newborn resuscitation at 3 hospitals. I will offer training to local staff on resuscitation for full-term and preterm babies. My findings will benefit local efforts to improve resuscitation and inform future research to test new ways of preventing brain injury.

The Jooay App has been developed and tested in Canada since 2015, and is now being established in Australia.

This collaborative project would enhance its development and application in Australia, would facilitate the development of research projects based on promoting community inclusion, participation in leisure and sports, and testing context-based and mobile technology use to promote the health and well-being of children with cerebral palsy and other developmental disabilities.

A comparative study of Canadian accessibility legislation with the Australian Disability policy would allow for a better understanding of factors contributing to or hindering the health and well-being of children with disabilities and their families. The similarity of political systems and socio-economic factors would allow for an in-depth understanding of how environmental factors such as policies and health care and social security systems can contribute to promoting inclusion, health and the implementation of rights-based approaches for children with disabilities.

The General Movements is a widely used assessment to identify neurological issues which may lead to cerebral palsy and other developmental disabilities.

I would like to attend the training to more fully understand normal and abnormal infant movements, their use in diagnosis and prognosis. Compared to other states in Australia there are a smaller number of Perth based therapists who are trained in completing this assessment.

As a community based therapist I have a keen interest in ensuring that knowledge around early identification and intervention for infants with Cerebral palsy is not limited to those working in tertiary hospital settings.

The Centre for the Rehabilitation of the Paralysed (CRP), in Bangladesh, provides rehabilitation for children with cerebral palsy. Learnings from a sabbatical of our colleague, highlighted the potential value of a team of Australian therapists providing training in goal directed therapy at CRP. In collaboration with the team at CRP, a qualitative research project was developed.

We are requesting financial support for return flights/accommodation to Bangladesh to conduct two phases of the project.

Hypoxic-ischemic (HI) brain injury continues to be a major cause of mortality and morbidity in infants, and prevention of cerebral dysfunction in these children is of high importance.

The Hershey Conference on Developmental Brain Injury brings together an international group of leaders including esteemed scientists and clinicians from a variety of fields related to brain development and injury. The conference encourages presentations and discussion with young trainees to ensure our next group of leaders are presenting results in the field. The focus of the meeting is on finding new and better modes of intervention and neuroprotection for the developing brain.

Hershey is the only developmental brain conference in the world and is relevant to my PhD. By attending this conference, I will have the opportunity to share my research with distinguished professionals in the field, and gain feedback on my studies in preparation for submitting my thesis in late 2020.

The aim of the proposed project is to early identify infants at risk for cerebral palsy (CP) and other neurodevelopmental disorders in 54 villages near Varanasi in Uttar Pradesh, India (50,000 inhabitants; 1000 births per year, annually expected 80 infants at risk for neurodevelopmental disorders, among them three infants with a high risk for CP).

Recent guidelines for the early identification of infants at risk for CP recommend the General Movement Assessment (GMA) in combination with neonatal magnetic resonance imaging as the assessments of choice. In less privileged settings where neuroimaging is not available, observation of the infant’s early motor behaviour comes into play.

In 2017,  the University of Queensland invited the PI of this application to conduct a training course on GMA in Kolkata, India. This training was embedded in the establishment of a parent-delivered early intervention programme in West Bengal. Only a year later, more than 200 health care professionals all over India received GMA training. Among them were 40 doctors, therapists and community workers from Varanasi; G.A.N.E.S.H., General Movement Assessment in Neonates for Early Identification and Intervention, Social Support and Health Awareness (https://kiranvillage.org/?page_id=3450) was  launched.

Infants with a high risk for CP and other neurodevelopmental disorders will receive affordable paediatric and neurological care, intervention and treatment but also nutritional support (including micronutrients).

The equipment will provide the necessary hardware for GMA and its data base; as GMA and intervention is partly provided at the families’ homes, transportation aids provide accessibility to diagnosis and intervention for all infants.