Cerebral Palsy Research - USA

2017 Grant Recipient Researchers

In 2017, our Grants Program awarded more than $5 million in project grants and career development grants to researchers across the globe, as well as people and infrastructure support.

Are you a Researcher?

Each year we invest millions of dollars in a range of cerebral palsy research projects.
Find out how our Grants program can help start or progress your project.
Applications for 2018 Grants open 1 July – 31 August 2018.

Rosalie Power

The Children’s Hospital at Westmead

Steptember Career Development Grant 2017
Title: Health related quality of life with focus on reproductive and sexual well-being of adolescents with cerebral palsy in rural Bangladesh.

The aim of this study is to describe the reproductive and sexual well-being of adolescents with cerebral palsy (CP) living in a low and middle-income country (LMIC). First, a systematic review will be undertaken to assess what is known about the reproductive and sexual well-being of adolescents with CP, globally. Second, to have in-depth understanding of the reproductive and sexual well-being of adolescents, we have designed a mixed methods study. Focus groups and individual interviews will be conducted with adolescents with CP and their primary caregivers identified through the Bangladesh Cerebral Palsy Register (BCPR) from the Shahjadpur sub-district in the northern part of Bangladesh to find out how adolescents feel about their reproductive and sexual well-being and what socio-cultural factors impact outcomes in this area. Interview outcomes will be compared to cases without disability. Findings will be used to guide the provision of resources and services to improve the long-term well-being of adolescents with CP. This research will describe the reproductive and sexual well-being of adolescents with CP to enable development of intervention programs that address determinants of wellbeing in Bangladesh and in low and middle income settings globally.


Tasneem Karim

The Children’s Hospital at Westmead

Career Development Grant 2017
Cerebral palsy (CP) in Bangladesh: towards developing a national CP register, surveillance, early diagnosis and interventions for children with CP in low resource setting

Cerebral palsy (CP) is the most common cause of childhood disability and 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 of CP is delayed in LMICs 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.

Shekeeb Mohammad

The Children’s Hospital at Westmead

Steptember Project Grant 2017
Improvement of care delivery and determining best outcome measures in children with dystonic cerebral palsy undergoing DBS

Selected children with severe dystonic cerebral palsy (CP) can benefit from a neurosurgical procedure called deep brain stimulation (DBS). DBS for dystonia involves permanent implantation of electrodes into parts of the brain called the globi pallidi or the subthalamic nuclei, which control movements. The electrodes are connected to an external pacemaker for adjustments and battery charging. Batteries in the pacemaker can last for 10-15 years, and then need replacement. We do not fully understand all patient and family related factors that can help decide which children will benefit most from DBS, how to best monitor response, set goals and measure outcomes. Currently paediatric DBS is not offered via a dedicated service and not available at all to most children in Australia. This application is for an enabling grant that will provide a framework to answer key questions and build up a service tailored to the study results.


Caroline Crowther

University of Aukland

Steptember Project Grant 2017
Antenatal Magnesium Sulphate at 30 to 34 Week’s Gestation for Fetal Neuroprotection – The MAGENTA Trial

Magnesium sulphate is recommended for women at risk of giving birth before 30 weeks’ gestation to reduce the risk of their baby developing cerebral palsy. Whether there are benefits at later gestations remains uncertain. The MAGENTA Trial is assessing whether magnesium sulphate given to women at risk of very preterm birth, between 30 to 34 weeks’ gestation reduces the risk of death or cerebral palsy in their children. If the results show benefit this would be of great importance to women at risk of very preterm birth, their children, the community, and would represent a very significant health benefit for Australia and New Zealand as well as having enormous relevance globally.

Angela Morrow

The Children’s Hospital at Westmead

Project Grant 2017
A qualitative study: the lived experience, impact on daily living and management of pain in children and adolescents with cerebral palsy

Pain is a common problem in children and adolescents with cerebral palsy (CP). Pain in the CP population may be attributed to the disease, environment and therapeutic factors. Research has explored the lived experience of pain in adults with CP, but there is a lack of qualitative data on children and adolescents with CP experiencing pain. This study will explore the lived experience of pain, its impact and the management strategies used in children and adolescents with CP. Children and adolescents with CP aged between 9-18 years attending the Kids Rehab department at the Children’s Hospital at Westmead will be invited to participate if they have reported pain. Semi-structured interviews will be conducted with the participants to better understand the experience of pain from the perspective of the young person.

Michael Fahey

Monash University, Victoria

Project Grant 2017
Finding the holy grail; “off the shelf” neural stem cell therapy for perinatal stroke

Perinatal stroke is a relatively common problem that is a principal cause of seizures, behavioural difficulties and cerebral palsy. Despite the remarkable ability of newborns to survive a stroke, there are currently no specific stroke treatments for infants, unlike adults. We propose that stem cells are an optimal treatment strategy. Specifically, the “holy grail” of treatments for perinatal stroke would be an off the shelf stem cell product that could halt the development of brain injury and repair damaged brain tissue. We will investigate a novel combination stem cell therapy, preconditioning with mesenchymal stem cells to improve the brain microenvironment for neural stem cell transplantation to mediate repair. Results from this work will lay the foundation for future clinical trials in humans.


Gulam Khandaker

Cerebral Palsy Alliance Research Institute

Project Grant 2017
An international multi-centre register of children with cerebral palsy in low and middle-income countries (Global LMIC CP Register: GLM-CPR)

This project aims to develop a platform for cerebral palsy (CP) surveillance through the establishment of an online data repository for an international multi-centre register of children with CP in low and middle-income countries (LMIC). This project will advance the knowledge base of CP aetiology and risk factors in LMICs to develop relevant, culturally appropriate and cost-effective prevention strategies. Furthermore, it will contribute to the development of regionally applicable strategies and models to build regional and national capacity, and the establishment of a global network for CP in LMIC through research, capacity building and service delivery.


Mark Mackay

Murdoch Children’s Research Institute

Project Grant 2017
Improving the early detection of cerebral palsy following symptomatic neonatal arterial ischaemic stroke using brain MRI imaging

Stroke affects 1 in 3, 5000-5,000 babies and is 17 times more likely to occur in the newborn period than any other time in childhood. Approximately one-third of newborns with stroke develop cerebral palsy (CP). Early detection of hemiplegic CP in babies with stroke is currently based on standardised clinical assessment at 3 months. Being able to recognise specific patterns on MRI scans at the time of stroke diagnosis, would mean even earlier identification of babies at high risk of CP. This study aims to identify specific brain imaging patterns associated with later development of CP, in over 120 Swiss and Australian children, using a combination of simple visualisation methods and more sophisticated brain mapping techniques. The study findings will assist health professionals to provide appropriate information to parents about their baby’s likelihood of developing CP prior to discharge, and allow early identification of babies requiring close developmental surveillance and intervention.


Roslyn Boyd

Queensland Cerebral Palsy and Rehabilitation Research Centre

Steptember Project Grant 2017
VISIBLE: Vision Intervention for Seeing Impaired Babies through Learning and Enrichment

This pilot feasibility RCT study will address an urgent gap in rehabilitative interventions for infants with brain damage and severe vision impairments. Infants with severe cerebral visual impairment (CVI) and at high risk ofA Cerebral Palsy (CP) at 3-6 months will be enrolled into a 6-9 month intervention program up to 12 months of age. This novel RCT study will assess the feasibility of a vision-awareness program actively engaging parents in enriching their babies’ vision and development. The home-based program of goal-directed early intervention will be supported by multidisciplinary team through parent training and fortnightly home visits. The daily intervention activities will be provided by the parents and will focus on environmental enrichment and targeted vision-aware developmental goals. Behavioural assessments will be utilized to evaluate the program efficacy on vision, motor, and general developmental function. The sites (Pisa, Brisbane, Sydney) will utilize existing early detection/intervention networks to ensure successful completion.


Koa Whittingham

The University of Queensland

Steptember Project Grant 2017
Early Parenting Acceptance and Commitment Therapy ‘Early PACT’ for parents of infants with cerebral palsy

Our aim is to test the efficacy of an early preventative family support package: Early Parenting Acceptance and Commitment Therapy (Early PACT) for families of infants identified as high risk of cerebral palsy (CP) at less than 12 months corrected age. We predict that Early PACT will have benefits to both parents, the infant and family functioning by leveraging the understanding, skills and the day to day interactions within the family system. Early PACT is consistent with the philosophy of family-centred care and, if effective, could be used to empower parents of infants identified as high risk of CP worldwide.


Graeme Polglase

Hudson Institute of Medical Research

Steptember Project Grant 2017
Reducing cerebrovascular injury in asphyxiated, asystolic near-term lambs

Perinatal asphyxia causes an estimated 1 million deaths worldwide annually, with most deaths occurring within the first hours of life. Survivors have a very high risk of moderate-to-severe neurological impairments, including cerebral palsy. At birth, asphyxiated infants are unable to initiate breathing and maintain cardiac output, which severely compromises blood flow to the brain and causes brain injury in the first hours of life. Babies born asphyxic require rapid intervention in the form of ventilation and in extreme cases, chest compressions. However, it is not enough to simply restore cardiovascular function in these infants. They must be supported in a way that protects the brain to provide the best opportunity for good neurodevelopmental outcomes. Our research focuses on improving clinical interventions for asphyxiated infants in the delivery room. Specifically, we will determine whether giving chest compressions, prior to or after umbilical cord clamping, can reduce brain injury in asphyxiated newborns.


Elizabeth Elliott

The University of Sydney

Project Grant 2017
Hospital-based Surveillance of cerebral palsy in Hanoi Vietnam using the Paediatric Active Enhanced Disease Surveillance System

In March 2016, CI Elliott and team received a Cerebral Palsy Alliance (CPA) grant (PG6115; $19,525) to: establish hospital-based surveillance of CP in 2 paediatric hospitals in Hanoi, Vietnam; characterise children presenting with CP to rehabilitation, general paediatric and neurology services; and estimate CP prevalence in Hanoi province. We identified a high burden of disease, delays in diagnosis, use of outdated treatment, poor access to evidence-based therapies, lack of mobility aids, and limited opportunities for clinician training. In partnership with colleagues in Vietnam we propose to build on the success of that grant and i) develop a Vietnamese CP register as an affiliated register with CPA; ii) audit current diagnosis and management of CP in Hanoi and evaluate compliance with evidence-based guidelines for best practice. Following this we will iii) provide training for Vietnamese clinicians in diagnosis and management of CP and iv) prospectively evaluate implementation of international practice guidelines.


Katherine Benfer

The University of Queensland

Project Grant 2017
Peer delivered early intervention for Indigenous Australian infants at high risk of cerebral palsy: a pilot RCT study

Consistent with the prevailing trend for poorer health outcomes for Indigenous Australians, cerebral palsy (CP) prevalence is significantly greater than that for non-Indigenous Australians; with CP arising after birth five times more likely. LEAP-CP (Learning through Everyday Activities with Parents) pilots the effectiveness of a peer-delivered culturally adapted early intervention for Indigenous infants at risk of cerebral palsy. Infants aged between 3 months and 2 years will be randomly assigned to one of two intervention groups; community-based parent-delivered intervention (goal directed active motor training, enriched environments and nutritional support), or standard care (health advice). Infants receiving the intervention are expected to have better performance on motor/ cognitive outcomes at 3 years, and caregivers to have improved mental health, which have the potential to reduce the burden of disability in Indigenous communities.


Noula Gibson

Ability Centre

Steptember Project Grant 2017
Evidence-based clinical guidelines for prevention and management of respiratory disease in young people with cerebral palsy

Each year, one in fourteen children and young people (aged up to 25 years) with cerebral palsy (CP) is admitted to hospital with respiratory illness. Two in five of these young people are re-admitted the next year. Some young people have many respiratory hospital admissions. Recent research has uncovered risk factors for identifying these young people earlier. However, there is currently no consensus about the most effective ways to prevent or manage respiratory illness in young people with CP. This project aims to review published information and gather expert knowledge about how clinicians can prevent respiratory illness in young people with CP, and manage it when it occurs. Doctors, young people with CP and their parents, physiotherapists, and speech therapists in Australia and internationally will be invited to participate. We aim to develop clinical guidelines for prevention and treatment pathways for young people with CP at risk of respiratory illness.


Tom Chau

Bloorview Research Institute

Project Grant 2017
The Switch-App: A novel and versatile home-based approach to personalized access technology for children with cerebral palsy and complex communication needs

We will develop and evaluate a novel home-based intervention designed to provide children with cerebral palsy and complex communication needs with a personalized computer/tablet access solution that can be easily set-up in their home environment. The intervention will entail the child-centred identification of orofacial movements (e.g., mouth opening/closing, eyebrow movements), keywords or vocalizations, and the home-based customization of a novel access technology, the “Switch-App”, to the identified user-specific inputs. The Switch-App will recognize orofacial movements and vocalizations via a camera and microphone, allowing in-home communication and writing practice.


Robert Galinsky

Hudson Institute of Medical Research

Steptember Project Grant 2017
Targeting the IL-1β inflammatory pathway for preventing preterm brain injury

Cerebral palsy is associated with exposure to systemic inflammation around the time of preterm birth. Changes in brain development after preterm birth likely reflect dysmaturation of cells, rather that overt cell loss. We will utilise a translational large animal model of inflammation-induced preterm brain injury to examine how inflammation impairs brain growth and function, and test whether blocking a key inflammatory pathway, using an FDA approved treatment, restores normal brain development. We will provide important insight into how brain injury evolves in response to exposure to inflammation during the perinatal period. If successful, the therapeutic intervention outlined in this proposal will lead to major advances in reducing the incidence and severity of adverse neurodevelopmental outcomes, such as CP, after preterm birth.


David Walker

RMIT University

Project Grant 2017
Midkine treatment for multi-organ protection from hypoxia and inflammation in neonates

The GOAL of this program is to develop a safe and easily administered therapy for infants that have experienced oxygen and nutrient starvation during gestation and at birth. We propose that treatment with the growth factor MIDKINE has the potential to address complications of birth asphyxia, principally neonatal encephalopathy (NE) and associated multi-organ dysfunction involving respiratory, cardiovascular, renal and digestive systems. In this project, we will determine the most effective and clinically relevant way to deliver midkine to neonatal animals (systemic vs intranasal routes), and investigate if midkine treatment at various times after birth improves the health of infants that would otherwise suffer multi-organ damage and cerebral palsy. The results of this study will be readily transferable to a clinical trial of midkine in infants – in both high-income settings where therapeutic hypothermia is available, and in low resource settings where such interventions are not available.


Clare McKinnon

Murdoch Children’s Research Institute

Project Grant 2017
Pain in Dyskinetic Cerebral Palsy

Children with CP have altered muscle tone which makes it more difficult for them to develop, move and play like typically developing children. In children with dyskinetic CP, their bodies move in an uncontrollable way that makes their posture and movement appear twisting or jerky in nature. Children with this type of CP often experience pain that can affect their well-being, ability to complete daily tasks on their own, and quality of life. However pain is hard to recognize, measure, and treat in this population. This study aims to explore the experience, recognition, and management of pain in children with dyskinetic CP. The study will identify the proportion of children with dyskinetic CP who experience pain and will further describe the intensity, body areas affected, and the impact pain has on children’s lives.

Morgan Sangeux

Murdoch Children’s Research Institute

Project Grant 2017
The NeuroDisability Movement Analysis Tool

Dyskinesia is a disabling movement disorder frequently identified in children with cerebral palsy. It causes significant pain and limitations to function resulting in reduced quality of life for children. Dyskinesia is challenging to assess accurately and treat effectively. There is a lack of clinically feasible, useful and sensitive tools that can accurately measure dyskinesia and its impact on a child’s function. Consequently, there are significant limitations in our ability to measure the effectiveness of the interventions offered to this population of children. This project will develop and validate a new tool that can accurately: 1) measure the amount of involuntary movement seen in dyskinesia, and 2) differentiate dyskinesia from other movement disorders. With clinically useful and accurate tools we will be able to measure dyskinesia in a meaningful way and tailor our interventions to ensure that the right interventions are given for the right child at the right time.

Alistair McEwan

University of Sydney

Project Grant 2017
Neural Interfaces for long-term implantable therapy in cerebral palsy

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.

Sue Woolfenden

University of New South Wales

Career Development Grant 2017
To what extent does the ‘inverse care law’ apply to paediatric health care in Australia? Investigating how disadvantage changes access to health care for children with CP and other disabilities at a population, service and individual level

The more a family struggles with money, education, employment and the poorer the neighbourhood they live in, the more likely their children will have poorer health and disabilities like cerebral palsy (CP) compared to children from richer backgrounds. Families with the least financial and social resources may have more difficulty getting the services that will pick up any disability that their child may have early and get them to therapy that will make a difference. Minority ethnic groups also tend to have worse health and struggle to access services. This research will determine if this is the case for children with CP and other developmental disabilities in Australia using big data and the voices of people with lived experience of CP. We will then work together to use this research to tackle these inequalities. These findings will assist in ensuring that all children who have CP and other disabilities receive the services that they need. Findings from this research will also inform future research with our Asia Pacific neighbours.


Traci-Anne Goyen

Western Sydney Local Health District

Project Grant 2017
Optimal head position for the first 72 hours of life: Neuroprotection for the preterm infant? A pilot randomised controlled trial

Bleeding in the brain is common in extremely preterm infants (33.9%) and is associated with poor outcome, including cerebral palsy, for up to 30% with brain bleeds. Most brain bleeds occur within the first 24–72 hours of life and protection of the brain during this critical period is essential in preventing brain damage. A problem with regulation of blood flow to the infant’s brain is thought to cause these bleeds. Evidence suggests that careful positioning of the preterm infant’s head in the first 72 hours of life may protect the fragile brain, with the potential to prevent brain bleeds and improve outcome. Clinical practice guidelines recommend centring the baby’s head as a preventative measure for brain bleeds, though with limited supporting evidence. This study aims to determine whether careful positioning of the head will reduce the incidence and severity of bleeding in the brain and likelihood of cerebral palsy.


Peter Lally

Imperial College London

Project Grant 2017
Quantifying the effect of co-existent perinatal sepsis on hypothermic neuroprotection in hypoxic ischemic encephalopathy using cerebral magnetic resonance biomarkers

Pre-clinical evidence suggests co-existent perinatal sepsis alongside birth asphyxia worsens brain injury, making therapeutic hypothermia ineffective, however this hypothesis has not yet been examined in clinical studies. We will measure the impact of co-existent perinatal infection on babies with perinatal asphyxia, with and without whole-body hypothermia, using the MRI data and blood samples of 408 babies, collected as part of a large randomised controlled trial of hypothermia (HELIX). Using the MR data, we will quantify the concentration of N-acetylaspartate (a marker of nerve cell integrity that strongly correlates with neurodevelopmental outcomes at 2 years) in the brain. We will use automated blood culture and targeted quantitative PCR for a wide range of perinatal pathogens to accurately detect perinatal infection. Using regression models, we will examine the associations between N-acetylaspartate, hypothermia and perinatal infection. These data will have substantial implications for the management of asphyxiated babies with co-existent perinatal infection.


Courtney McDonald

Monash University

Project Grant 2017
Targeting the inflammasome; the key to curing Cerebral Palsy?

Inflammation is a critical contributor in complications that occur during pregnancy and birth, and result in perinatal brain injury. These include hypoxic ischemic encephalopathy (HIE), chorioamnionitis, intrauterine growth restriction (IUGR) and genetic inflammatory conditions such as Aicardi Goutieres syndrome (AGS). Currently, many of these conditions have insufficient therapeutic options and for those that do, such as hypothermia for HIE, many babies still develop severe neurological impairment. There is a desperate need to develop new therapies. Neuro-inflammation is a common pathway mediating brain injury, and therefore we propose that targeting inflammation will aid in ameliorating or curing CP. The role of the inflammasome, a key signalling platform that matures highly pro-inflammatory cytokines, is not well described in perinatal brain injury and is a likely target for therapeutic intervention. Its role in adult inflammation is well understood and inhibitors have been developed that have the potential to be ‘repurposed’ for perinatal brain injury.


Amanda Kwong

The University of Melbourne

Career Development Grant 2017
Using a Parent-Operated Smartphone Application to Screen Infants for Cerebral Palsy and Motor Impairment

This study aims to assess the use of a parent-operated smartphone app, Baby Moves, in approximately 250 infants born extremely premature (born 3-4 months before their due date) or extremely low birth weight (born less than 1kg in weight) and 250 infants born at full term from 2016 to 2017 in Victoria to detect later motor problems, including cerebral palsy (CP), which is a major childhood disability. Early infant motor screening is important to identify infants who are at risk of developing CP as commencement of early intervention can improve later outcomes. Videos will be captured by parents and reviewed remotely by skilled clinicians using the General Movements Assessment, which can predict infants who will develop CP with excellent accuracy. This is the first time that a smartphone app will be used to screen infants for motor delay and hence, the feasibility of this app will be tested within my PhD. By using a family-centred approach, the Baby Moves app aims to improve identification of at-risk infants, access to timely assessment and beneficial intervention for our most vulnerable infants.

Marlies Declerck

Anton De Kom University of Suriname

Steptember Project Grant 2017
Suriname Cerebral Palsy Register

The Suriname CP Register project aims to set-up a CP register, meeting international standards, in order to gather information on children who currently have CP and children who will be diagnosed with CP in the future. This information is both related to the causes of CP, as well as, the problems the children and families are facing, and the help or services they need. Suriname is an upper-middle income country on the north east coast of Suriname and hosts people with a variety of cultural and ethnic backgrounds. Unfortunately, children with CP are underrepresented in the society, and are known not to be diagnosed correctly and not to receive proper treatment. In order to improve the management for these children and families, we aim to set-up a system for registering the children with CP, so knowledge can be gathered and appropriate management and services can be offered in the future.

Kenneth Roger Katumba

MRC / UVRI Uganda Research Unit

Steptember Project Grant 2017
The Cost of Improving Early Detection and Intervention for Young Infants at High Risk of Neurodevelopmental Delay and Disability in Uganda

Each year, more than 8 million children are affected by birth complications which increase their risk of disability including cerebral palsy. The majority live in developing countries like Uganda, with limited resources to support affected children and their families. The ABAaNA Early Intervention Programme is a facilitated, community-based group programme for young children with cerebral palsy that has been developed by our international research team for use in low-income countries. Early research has shown positive effects of the Programme for children and families and a larger trial is underway to more fully assess the Programmes full impact on health and well-being. This proposed study will build on this existing work to examine i) the cost to families and services of caring for a child with disability in Uganda and ii) the cost-effectiveness of the ABAaNA Programme. The findings will support future implementation, scale-up and sustainability of the Programme.


Suzie Miller

The University of Sydney

Project Grant 2017
Does antenatal lactoferrin promote connectivity of the growth restricted brain?

In perinatal medicine, fetal growth restriction (FGR) is a common complication of pregnancy associated with high risk of mortality, and in survivors, preterm birth and neurodevelopmental deficits. There are currently no antenatal or postnatal treatments that are proven to improve neurological outcomes in FGR infants. Brain grey matter volume is reduced in human FGR infants, with new imaging technologies demonstrating that the neuropathology associated with human FGR does not necessarily include gross lesions, structural deficits or cell loss, but predominantly consists of poor connectivity and networking between cells. This is critical, as reduced network complexity is correlated with cognitive deficits and hyperactivity in children who were FGR at birth.


Paul Dawson

Mater Medical Research Institute

Project Grant 2017
Sulphate pharmacokinetics in preterm neonates: towards a sulphate therapy to reduce the rate of cerebral palsy (KiSPrem study)

Preterm birth places more than 4000 Australian infants born each year at an increased risk of cerebral palsy. We are addressing this health issue with our research into the neuroprotective role of sulphate among preterm babies, which: (i) demonstrates sulphate deficiency in preterm infants; and (ii) supports an association between low blood sulphate level at 1 week of age and abnormal General Movements assessment, which predicts cerebral palsy. That study will lead into a clinical trial of neonatal sulphate intervention. However, in order to design a supplementation trial we need to have a robust understanding of sulphate pharmacokinetics in preterm infants, as well as identify a plasma sulphate level that is protective. This information is essential for understanding the required dose and timing of neonatal sulphate supplementation, which may prove a low-cost, simple and effective treatment that would be available to all preterm infants to prevent cerebral palsy.


Amanda Spirit-Jones

Cerebral Palsy Alliance

Project Grant 2017
RCT Pilot Study Comparing Intensive Motor Learning Feeding Interventions to Standard Practice in Infants at Risk of Cerebral Palsy

Dysphagia affects 70-100% of children with cerebral palsy (CP) and can impact growth, development or result in aspiration pneumonia; the leading cause of death in CP. This pilot randomised controlled trial study, aims to understand whether oral feeding difficulties, reliance on compensatory strategies, secondary impairments and related morbidity can be reduced in infants who are at risk of or have been diagnosed with CP. We will compare Intensive Early Active Treatment (I-EAT) to usual care. I-EAT program comprises intensive intervention (4 weeks of twice weekly sessions, followed by 8 weeks of weekly sessions) in the home setting. Parents will be supported to implement interventions individualised to their infant’s feeding skills and will follow neuroplasticity and motor learning principles. Intervention will begin with traditional compensatory strategies, which simplify the feeding task, and will be slowly titrated down to safely manage increasingly more difficult tasks, build skills and minimise reliance on compensation.

Steven Miller

Hospital for Sick Children, Canada

Steptember Project Grant 2017
POEM: Pain, Outcomes and Epigenetic Mechanisms of Cerebral Palsy

Very preterm neonates remain at high risk for cerebral palsy (CP) due to the vulnerability of the developing brain. We now recognize the adverse impact of neonatal pain on the preterm brain. How pain contributes to the burden of CP in children born preterm remains largely unknown. Our findings suggest that pain may alter key sensory pathways in the brain. Abnormal development of these pathways may then lead to CP. Early pain may also alter gene expression through “epigenetics”. In this 4-year prospective study we propose building on an ongoing study to add epigenetic samples and long-term follow up for a group of very preterm neonates (n=120) in a foundational cohort; these preterm neonates are being studied serially with advanced MRI and neurodevelopmental testing. Understanding how pain impacts the brain and the role of epigenetics in the preterm population may be one key to preventing CP in this vulnerable population.