2020 August - QCPRRC Bi-annual Research Update - v1.0



Queensland Cerebral Palsy and Rehabilitation
Research Centre
31 August 2020

Biannual Research Update



Director’s Message
Dear Families and Collaborators,
The Year of 2020 has certainly been a paradigm shift adapting quickly to COVID-19! The
pandemic has been concerning both for the clinical community and families we support,
however QCPRRC has transformed our way of research to telemedicine/health modes
of delivery, adapting to the ever changing pandemic/world, supporting consumer needs
and adapting many of our interventions and assessments to be delivered using telehealth
technologies via Zoom and The University of Queensland edX platform. We have been
busier than ever assisting our clinical colleagues with online screening using the
BabyMoves App, temporarily shifting the telehealth delivered home based interventions, validating delivery of
telehealth delivered assessments and providing additional support to families impacted by quarantine
measures. The QCPRRC team spent the 3 months of reduced contact repurposing ourselves with updating
publications and preparing for further grant rounds.
Key highlights include:


The QCPRRC team had a strong start to 2020 with major contributions to the AusACPDM conference
in Perth in early March just prior to travel restrictions – bringing world class research experts in the field
of child neurology research to Perth; despite COVID-19 pandemic (see full report page 17);



Prof. Boyd has delighted to announce the first winner of the international Elsass Research Prize to Prof.
Bernard Dan on behalf of the international jury;



Taking the opportunity to progress our professional development – conducting a General Movements
Training Course at Townsville University Hospital for local clinicians and indigenous researchers and
two basic and one advanced courses in Brisbane led by GM accredited trainers Professor Andrea
Guzzetta (University of Pisa), Professor Alicia Spittle (The University of Melbourne), and Dr Cath
Morgan from the Cerebral Palsy Alliance (page 2);



Over nine weeks from May to June we conducted our comprehensive Systematic Review course to 56
colleagues from across Australia, North America, and South East Asia. Within the course a GRADE
Analysis Workshop was delivered by Dr Sue Brennan from The Melbourne Cochrane group;



Our Centre of Research Excellence AusCP-CTN led an intensive Online Grant Writing Workshop for
early and mid-career researchers with guest speakers including Prof. Anne Kelso (CEO NHMRC), Prof.
Ian Fraser AC, with 19 local mentors and 43 mentees;



I was honoured to receive an NHMRC Investigator grant (Level 1) for 2021-2025 entitled “Early
Detection and Early Intervention of Infants at risk of Cerebral Palsy” (see more on page16);



Our European Union Horizon Grant success for the Born-to-get-there project was further supported with
$0.5M funding from the NHMRC (page 15);



The LEAP-CP trial received additional funding from Perpetual Trustees to expand the project by
supporting two part-time Physiotherapists (based in Townsville and Cairns) to work with local families
(page 15).

Our next focus has been taking our LEAP-CP success from working with LMIC to local communities through
engagement with Aboriginal and Torres Strait Islander stakeholders, recruitment of Indigenous researchers
who will lead the cultural adaptation of the LEAP-CP early detection and early intervention program.
We look forward to your involvement in our research centre and our national programs.
With warm regards,
Ros Boyd
Professor of Cerebral Palsy Research, Faculty of Medicine, The University of Queensland.
Scientific Director, Queensland Cerebral Palsy & Rehabilitation Research Centre
Email: r.boyd@uq.edu.au

1



Feature
AusCP-CTN CRE Education Program
AusCP-CTN aims to foster and develop current and future leaders in cerebral palsy research and clinical
practice. Our vision for the future workforce for children with CP is to build national capacity comprising
individuals with expertise in more than one key area of research and/or training (basic science/ neuroscience,
epidemiology, clinical/health services initiatives, and translation/ implementation). Through our Education
Program we aim to provide and facilitate a range of interactive clinical trainings and workshops for researchers
and clinical professionals. To date our Education Program has benefited over 2,000+ clinicians, health
professionals, researchers, and higher degree research students in upskilling their knowledge and skills in
novel paediatric neurological research, diagnosis and interventions. Further information about our Education
Program please refer to our website1 https://cre-auscpctn.centre.uq.edu.au/education.
General Movements Course
Compelling evidence is now available that qualitative assessment of General Movements (GMs) at a very early
age is the best predictor for cerebral palsy. This method has become a potent supplement to the traditional
kind of neurological examination. AusCP-CTN has liaised with accredited trainers from GM Trust (Prof. Andrea
Guzzetta, MD PhD, The University of Pisa, and Prof. Alicia Spittle, The University of Melbourne, and Dr Cathy
Morgan, Cerebral Palsy Alliance) and held one Refresher and one Basic course in Townsville (25 – 29
February, 2020), and one Basic and one Advanced course in Brisbane (1 – 4 March, 2020). These courses
fulfil the standards specified by the GM-Trust2.
The Basic GMs Course provides an introduction to Prechtl's Method on the Qualitative Assessment of General
Movements in young infants. This new assessment method has shown its merit for the prenatal and postnatal
evaluation of the integrity of the nervous system. The Advanced GMs Course provides additional intensive
training in correct judgement. This training deals with the details of the assessment, the proper terminology
and techniques, as well as with the application of individual developmental trajectories.
The General Movements courses across both Townsville and Brisbane has attracted over 75 researchers,
medical clinicians, and allied health professionals from universities and hospitals across Queensland and New
South Wales.

The 2020 General Movements Course in Brisbane, 1 – 4 March 2020.

Online Systematic Review Workshop and GRADE Analysis Course
A virtual nine-week Systematic Review Workshop was held online, 1 May – 26 June 2020. The interactive
workshop was designed to enable the attendees to gain a comprehensive knowledge and practical experience
in conducting a systematic review and meta-analysis of efficacy of treatment, a clinimetric review of measures,
1
2

AusCP-CTN CRE Education Program: https://cre-auscpctn.centre.uq.edu.au/education
GM-Trust: www.general-movements-trust.info.

2



and/or a review of diagnostic criteria for a clinical area. Despite challenging time differences, the intensive
nine-week workshop attracted 56 attendees (researchers, higher degree research students, medical clinicians
and health professionals) from across the time zones, Australia, Nepal, and the USA. From QCPRRC, our inhouse Biostatistician, Mark Chatfield and Research Occupational Therapist and PhD Scholar, Andrea
Burgess, presented lectures on Biostatistics for Clinical Trials, Meta Analysis and Clinimetrics.
As part of the Systematic Review Workshop, Dr Sue Brennan from Melbourne GRADE Centre were also
invited to conduct a one-day interactive session on GRADE analysis. GRADE (Grading of Recommendations,
Assessment, Development and Evaluations) is a transparent framework for developing and presenting
summaries of evidence and provides a systematic approach for making clinical practice recommendations.
Workshop topics included: Overview (GRADE in systematic review, guideline process), Interpreting effect
estimates, How to GRADE the evidence, Using the GRADE criteria, Making recommendations.
For more information about our Systematic Review workshop: https://creauscpctn.centre.uq.edu.au/event/845/systematic-review-workshop-2020
GWW20203: Online Grant Writing Workshop
As a collaborative initiative with colleagues across the
AusCP-CTN CRE, The University of Queensland (Faculty
of Medicine), Curtin University (School of Occupational
Therapy, Social Work and Speech Pathology), and
Telethon Kids Institute, Prof. Roslyn Boyd has led an online
three-day intensive Grant Writing Workshop, delivered
online via Zoom. The workshop was designed as a
professional development opportunity for our researchers
and clinicians who are undertaking research to ‘take
advantage’ of down time that may have resulted from the
COVID-19 pandemic, to work with experts from across the
institutes to elevate and sharpen their grant writing skills to
better prepare for future funding opportunities.

Prof. Ian Frazer AC as our invited keynote speaker for the
4th AusCP-CTN Intensive Grant Writing Workshop, in
collaboration with UQ, Curtin University, and Telethon Kids
Institute.

This is the fourth year Prof. Boyd has facilitated the workshop, and is our biggest – we were fortunate to have
keynote presentations including Prof. Ian Frazer on grantsmanship and MRFF, Prof. Anne Kelso on
activities/focus of NHMRC, and Dr Jodi Clyde-Smith on investigator grants and impact statements. The
workshop has attracted 43 mentees (Early and Mid-career researchers and clinicians from hospitals and
research institutes across Qld, NSW and WA), with 19 mentors from both UQ and Curtin who have very
generously contributed their time and mentorship on achieving successful research profiles. We have also
invited Research Development Managers, Biostatisticians, and Impact Metrics Librarians to work with
workshop mentees to refining their draft applications. The workshop covered a range of topics and components
in preparing a successful grant application, including consultation with mentors on
investigator/partnerships/ideas grant and career directions, project pitch, developing impact statement, impact
evidence using alt metrics, sample size and statistics analysis, philanthropic opportunities, and involving
consumers and aboriginal communities. The workshop concluded with mock grant panel review and
discussions, providing insight to early career researchers on areas to focus on when grant is being reviewed.
For more information and presentations
auscpctn.centre.uq.edu.au/GWW2020.

from

the

workshop

is

available

online:

https://cre-

Sign up to our AusCP-CTN CRE Education Program4 to be in the
know for upcoming courses.

3
4

AusCP-CTN GWW2020: https://cre-auscpctn.centre.uq.edu.au/GWW2020
AusCP-CTN Education Program: https://cre-auscpctn.centre.uq.edu.au/education

3



LEAP-CP5: Learning through Everyday Activities for Indigenous infants
with cerebral palsy and their Families
The LEAP-CP trial is an early detection and intervention program for infants at high risk of cerebral palsy/
adverse neurodevelopmental outcomes whose families identify as Aboriginal and/ or Torres Strait Islander.
What makes this program unique is its proactive approach (screening in the first year of life) and delivery
through Indigenous Allied Health Workers from the local community. This ensures the cultural relevance and
safety of the program content and service delivery model. The program is currently securing ethics and
establishing governance for state-wide recruitment across Queensland, as well as sites in Western Australia.
COVID-willing recruitment will start shortly! We are fortunate to have an experienced physiotherapist join as a
PhD candidate, Ms Carly Luke, who is based in Townsville, and focuses on the screening and diagnostic
accuracy/ cultural appropriateness of measures. We have also recently been joined by an experienced and
highly connected public health clinician, Ms Leeann Mick-Ramsamy, as a PhD candidate, who will provide
critical guidance on the cultural aspects of the program. We welcome interested clinicians and organisations
who may like to explore involvement on the program to connect with us.
The LEAP-CP program is based on a successful trial Dr Benfer has
developed, trialled and implemented, in India. Through working with a team
of dedicated researchers, local site coordinators, and community disability
workers from Asha Bhavan Centre, Dr BC Roy Postgraduate Institute of
Paediatric Science, Child in Need Institute, Indian Institute of Cerebral Palsy,
Dr Benfer has led and implemented the intervention with local communities.
The LEAP-CP project has now finished data collection in Kolkata India, with
749 babies with birth risk factors screened with the General Movements and
HINE, and 142 babies at high risk of CP (12-40 weeks) recruited to an RCT
of LEAP-CP. The project has received funding from Dr Katherine Benfer’s
NHMRC Early Career Fellowship, Queensland Children’s Hospital
Foundation and Cerebral Palsy Alliance, which will further assist Dr Benfer in
carrying out her project in rural regions of Queensland and Western Australia
working with indigenous communities.

Infant with CP in Kolkata practicing
Active motor and learning games
with his mother and community
worker.

Contact Details: Dr Katherine Benfer, NHMRC Early Career Fellow, k.benfer@uq.edu.au.
This project is funded by Children’s Hospital Foundation, Cerebral Palsy Alliance, and NHMRC Horizon 2020
Australia Funding.
Chief Investigators: Dr Katherine Benfer, Prof. Roslyn Boyd, Prof. Anthony Smith, Dr Koa Whittingham, Prof. Yvonne
Cadet-James, Dr Alan Ruben, Prof. Iona Novak, Dr Catherine Morgan, Dr Gulam Khandaker, Mark Chatfield, Dr Joshua
Byrnes, Lynda McNamara, A/Prof. Jane Valentine, Prof. Catherine Elliott.

LEAP-CP - Detection sub-study: Early Detection of Australian Aboriginal and Torres Strait Islander
Infants at high risk of adverse neurodevelopmental, motor and cognitive outcomes at 12 months
corrected age (CA)
The LEAP-CP detection sub-study is designed to implement an early screening and detection program for
infants at high risk of cerebral palsy or adverse neurodevelopmental outcomes, whose families identify as
Aboriginal and/ or Torres Strait Islander. The study aims to determine the cultural appropriateness and
diagnostic accuracy of assessments used to predict a later diagnosis of cerebral palsy or adverse
neurodevelopmental outcomes, including autism spectrum disorder, fetal alcohol spectrum disorder and
developmental delay, at 12 months corrected age (c.a). Participants will be a prospective cohort of 120 infants,
aged 0 to 9 months corrected, from sites across North QLD including Townsville, Palm Island, Cairns, Torres
Strait and the Cape, Mt. Isa, Mackay, and Rockhampton. Infants will complete screening assessments at 3
months c.a (General Movements assessment) and at 6 to 9 months c.a (neurological, motor and
developmental assessments). Infants who are considered to be “at high risk of CP and/adverse
neurodevelopmental outcome”, following the screening assessments, will be eligible for the LEAP-CP
intervention trial. All participants will be followed up at 12 months c.a to determine motor, cognitive,

5

LEAP-CP Indigenous: https://qcprrc.centre.uq.edu.au/project/peer-delivered-early-detection-and-intervention-infants-high-risk-cerebralpalsyneurodevelopmental-disability-indigenous-australia-learning-through

4



neurological and developmental outcomes. We are currently securing ethics and establishing governance for
state-wide recruitment across Queensland and are hoping to commence recruitment shortly.
Ms Carly Luke, Paediatric Physiotherapist at the Queensland Children’s Hospital was
recently awarded a PhD scholarship from the Cerebral Palsy Alliance6 to undertake
‘A Prospective cohort study of indigenous infants at high risk of Cerebral Palsy in Far
North Queensland’, as part of the LEAP-CP program based at the Townsville
University Hospital. To find out more about Carly’s PhD project:
carly.dickinson@uq.edu.au.

Carly Luke leading the HINE training
at the 2019 LEAP-CP SAARC
conference, Kolkata, India.

RaceRunners roll into UQ Athletics Club
In late May, Dr Sarah Reedman and colleague Dr Emma Beckman from Human Movement and Nutrition
Sciences took receipt of the five RaceRunners funded by the Brisbane City Council Access and Inclusion
Partnership Grant.
RaceRunning is a sport designed specifically for people who are not able to run due to severe motor and
coordination disabilities. First invented in Denmark in 1991 to challenge the stereotypes of what people with
cerebral palsy could or should do, the RaceRunning participants uses a custom-built three-wheeled trike –
with a seat and chest pad for user’s upper body and weight support but no foot pedals – so the racerunner is
able to propel forward using their feet and steering with hands and arms. RaceRunning is adaptive to many
activities – sport, general fitness, play, family time – it is also highly beneficial to people with neurological
disabilities and cerebral palsy in building muscle growth and bone density, leading to better posture, general
strength, endurance, and control of trunk and limbs.

QCPRRC Dr Sarah Reedman and colleague Dr Emma Beckman
from Human Movement and Nutrition Sciences took receipt of the
five RaceRunners funded by the Brisbane City Council Access and
Inclusion Partnership Grant.

Recognising the multiple benefits of RaceRunning, Dr
Sarah Reedman (The University of Queensland) was
determined to promote the sport in Australia and
introducing it to the community. As part of the
RaceRunning Australia working group, Sarah has
been collaborating with like-minded researchers,
allied health clinicians, and many potential athletes, to
participate in come-and-try events across New South
Wales, South Australia, Queensland, Victoria and the
ACT. Teaming up with another researcher from UQ,
Dr Emma Beckman (Exercise Physiologist), Sarah
and Emma are establishing training facilities for
athletes in conjunction with The University of
Queensland Athletics Club, BLK Performance Centre
and Disability Sports Australia.

RaceRunning is an innovative new sport for people with mobility and balance limitations. RaceRunning is now
included on the World Para-athletics program for people with cerebral palsy and acquired brain injury who are
not able to functionally run, and it is hoped that it will be included in the Paralympic games schedule by 2024.
Sarah and Emma offer free squad training sessions on Tuesdays 4-6pm and Saturdays 9-10am at the UQ
Athletics Track, and have bikes available to suit athletes between 6-99 years of age!
To find out more details about RaceRunning: https://australian.physio/inmotion/race-running-promote-goodhealth. Contact Dr Sarah Reedman to get involved in the initiative: s.reedman@uq.edu.au.
6

Cerebral Palsy Alliance: https://cerebralpalsy.org.au/

5



Program Update
QEDIN7: The Queensland Early Detection and Early Intervention
Network
The Advancing CP in Queensland program has successfully designed, established and implemented the
Queensland Early Detection and Intervention Network (QEDIN) across Queensland. The network now has
over 230 registered clinicians from all 16 Hospital and Health Services across Queensland and the Mater
Health Services, allowing recruitment and referral of infants for screening for at risk of Cerebral Palsy. The
Network has successfully referred 178 infants, 128 consented, and over 80 infants referred and enrolled into
various clinical trials. The network model has been translated into a larger national program (KiTE-CP) which
is a multi-site study which connects clinical research across Victoria, New South Wales, and Queensland.
QEDIN serves as the Queensland arm of the KiTE-CP program which aims to identify infants with CP in the
first 6 months after birth to facilitate tailored CP-specific intervention.
Since establishment, QEDIN has already trained ~700 clinicians in standardised assessments for the early
detection of CP by conducting 4-hour practical courses on the Hammersmith Infant Neurological Assessment
(HINE). Further General Movements Training (3.5 days) was conducted in February/March 2020 in Townsville
and Brisbane. The QEDIN team has been actively assisting local teams to screen for infants at high risk of CP
using the Baby Moves App to retrieve videos of infant between 12-16 weeks for screening on the General
Movements Assessment. Dr Joanne George together with other Queensland HINE trainers have conducted
25 HINE courses across Queensland. This has enabled infants at high risk of CP with Absent Fidgety
Movements and or low scores on the HINE to be referred to clinical trials that the infant is eligible for. Current
studies that infants can be recruited to include REACH, GAME, and PREBO, and new studies that have
commenced are Early-PACT, NEBO, Wearable Sensors, and VISIBLE.

Studies currently recruiting
Early Detection & Early Intervention Studies:
KiTE CP: Early identification of infants with cerebral palsy: implementation of evidencebased guidelines into practice.
KiTE CP is a multi-site study across Victoria, New South Wales and Queensland. The overall aim is to identify
infants with CP in the first 6 months after birth to facilitate referral to targeted, best practice CP-specific early
intervention. This is the time of maximal neuroplasticity to optimise long-term developmental outcomes. One
thousand infants with increased risk of CP born between October 2018 and December 2020 will be recruited
when infants are aged less than 7-months’ corrected age (CA). Infants will complete neurobehavioural
assessments at 3-4 months CA, neurodevelopmental assessments at 3-6 months CA and a follow-up
assessment at 2 years’ CA. KiTE CP may assist in identifying CP earlier than is currently possible allowing
children to receive targeted interventions earlier during critical periods of brain development. This may lead to
improved long-term developmental outcomes for the child. The study has recently commenced recruitment
across Queensland, with 35 already recruited in Queensland and it is anticipated 300 infants will be recruited
within the state. The already established ‘Early detection of infants at risk or with cerebral palsy: QLD Clinical
network (QEDIN-CP)’ will be used to help identify eligible infants.
Contact Details: Dr Tracey Evans, KiTE CP Clinical Research Coordinator, (07) 3069 7365,
QCPRRC@uq.edu.au.
This project is funded by NHMRC partnership grant (APP158200)
Chief Investigators: Prof. Alicia Spittle, Prof. Iona Novak, Prof. Roslyn Boyd, Dr Cathy Morgan, Prof. Paul Scuffham, Prof.
Russell Dale, Prof. Paul Colditz, A/Prof. Michael Fahey, Prof. Rodney Hunt, Dr Kerstin Pannek.

7

QEDIN: https://qcprrc.centre.uq.edu.au/qedin-cp

6



Understanding the Early Natural History of Cerebral Palsy - A Prospective Cohort Study
This is a prospective longitudinal cohort study which aims to recruit participants at high risk of cerebral palsy
in order to describe motor trajectories over the first 2 years of life. 300 participants will be recruited in Australia
(NSW, VIC and QLD) as part of a larger international study which aims to recruit 1000 participants. A maximum
of six measurement time points will be included after enrolment: 3 months, 6, 9, 12, 18 and 24 months, with a
minimum requirement of three to be completed. The standardised assessments will cover the following
domains: neurological, motor, vision, sleep, independence in self-care, musculoskeletal, cognition, speech and
language, feeding, adaptive behaviour, parental wellbeing and health resource use. These will provide the first
comprehensive developmental trajectories of this group to contribute to the existing knowledge of CP
development. This will to assist clinicians and therapists with accurate information on prognosis and provide
targeted interventions early and at the 'just-right' challenge. Where indicated, individual participants' results
from this study will be used to inform their therapy. The study is due to commence in Queensland soon
following final site approvals.
Contact Details: Dr Tracey Evans, Understanding the Early Natural History of Cerebral Palsy Clinical
Research Coordinator, (07) 3069 7365, QCPRRC@uq.edu.au.
This project is funded by NHMRC partnership grant (APP158200)
Chief Investigators: Dr Cathy Morgan, Prof. Alicia Spittle, Prof. Iona Novak, Prof. Roslyn Boyd, Prof. Russell Dale, Prof.
Paul Scuffham, Dr Koa Whittingham, A/Prof. Michael Fahey, Dr Kerstin Pannek, Ms Anna te Velde.

NEBO: Neonatal Encephalopathy Brain Outcomes: Prospective study of Clinical and MRI
Biomarkers in term born infants to improve accurate early prediction of Cerebral Palsy
The NEBO trial is an observational study of infants born at term with Hypoxic Ischemic Encephalopathy (HIE).
The aim of the study is to determine the ability of clinical assessments and neuroimaging to predict
neurodevelopmental outcomes including motor, cognitive, neurological outcomes and a diagnosis of high risk
of Cerebral Palsy. Up to 80 term born infants with HIE will be recruited at the Royal Brisbane and Women’s
Hospital (RBWH) and the Mater Mothers’ Hospital (MMH) neonatal units. Assessment measures will be
completed at 1-10 days after birth and at 3- and 24- months-of-age. A total of 54 infants have already been
recruited and completed their post-birth assessments, with 40 of these also completing the 3-month
assessment and 10 completing the 24-month assessment. A group of 20 healthy term born infants will also be
recruited and complete the same assessments to allow for a comparison of results between the two groups.
Identifying term born infants at a high risk of adverse developmental outcomes and cerebral palsy could enable
earlier referral to specialist diagnostic teams and targeted interventions during infancy, which is a time of
maximum neuroplasticity.
Contact Details: Dr Tracey Evans, NEBO Research Coordinator, (07) 3069 7365, QCPRRC@uq.edu.au.
This project is funded by the Advance Queensland Innovation Partnerships Program Grant 16-103.
Chief Investigators: Prof. Roslyn N Boyd, Prof. Paul Colditz, Dr Pieter Koorts, Prof. Alan Coulthard, Dr Jane Bursle, Prof.
Helen Liley, Prof. Stephen Rose, Dr Kerstin Pannek, Dr Jurgen Fripp, Dr Joanne George, Dr Nicola Previtera, Dr Steve
Mehrkanoon, Prof. Boualem Boashash, Prof. Rob Ware, A/Prof. Josh Byrne, Prof. Paul Scuffham, Dr Simona Fiori, A/Prof.
Andrea Guzzetta.

GAME8: Harnessing Neuroplasticity to Improve Motor Performance in Infants with Cerebral
Palsy: A Pragmatic Randomised Controlled Trial
GAME study is a randomised controlled trial for infants with cerebral palsy to evaluate the effects of infantfriendly intensive, specific enriched training, known as “GAME” versus traditional passive early intervention on
child development at 2 years-of-age. Infants are randomly assigned to either a traditional passive early

8

GAME: https://qcprrc.centre.uq.edu.au/article/2019/07/game

7



intervention or a weekly intervention involving active motor training, parent
education and environmental enrichment. Families in the motor training group
are visited weekly in their home by specially trained GAME therapists. Of the
300 families required for the study, 230 have already been recruited from New
South Wales, Queensland, Victoria and Western Australia. Recruitment and
home visits were temporarily suspended in March and April of this year due to
the COVID-19 pandemic, to protect the clinical trial participants and staff. During
this time, potentially eligible infants continued to be identified through referrals
from hospitals and clinics. They were then contacted and recruited when
restrictions were lifted to avoid families missing the opportunity to participate.
For families already recruited to the GAME study, telehealth methods replaced
home and clinic visits to continue the GAME therapy and assessments until faceto-face contact could be resumed.
GAME baby working on her

Contact Details: Dr Tracey Evans, GAME Clinical Research Coordinator, (07) 3069 motor function skills through
7365, QCPRRC@uq.edu.au.
playing duplo.
This project is funded by NHMRC Project Grant 1120031.
Chief Investigators: Prof. Iona Novak, Dr Cathy Morgan, Prof. Nadia Badawi, Prof.
Roslyn Boyd, Prof. Alicia Spittle, Prof. R Dale, Ms A Kirby, Prof R Hunt, Dr K Whittingham, Dr K Pannek. A/Prof M Fahey.
Associate Investigators: A/Prof. K Walker, A/Prof. A Guzzetta, Dr K Prelog, Prof. W Tarnow-Mordi, Prof. S Rose, Ms C
Galea, Ms S Clough, A/Prof. R Morton, Dr A Tran.

REACH9: Rehabilitation Early for children at risk of Congenital Hemiplegia
The REACH study is a multisite randomised controlled trial which directly
compares two types of therapy, an intensive infant friendly one handed approach
using modified Constraint Induced Movement Therapy (mCIMT) to an equally
intensive two handed approach using Bimanual Therapy (BIM) in very young
infants with asymmetric brain lesions. The aim is to determine whether mCIMT is
more effective than BIM in improving unimanual capacity and bimanual coordination at 12-15 months corrected age (c.a.) and fine motor and cognitive
development at 24 months c.a. Infants have been recruited from sites in Australia
(QLD, NSW, VIC and WA) and the United States (Minnesota, Ohio, Riverside
County). During COVID-19 restrictions investigators exchanged face-to-face home
and clinic visits for telehealth sessions to complete the therapy and assessment
measures. New telehealth manuals, protocols and guidelines were developed to REACH baby working with
minimise the disruption to families and study timelines. The work and therapist on training his hand
motor function skills.
understanding of the study families, investigators, therapists and clinicians during
this time was greatly appreciated, resulting in the continuation of recruitment and
data collection. The study has now completed recruitment with a total of 96 infants entered into the study. A
small number of families are completing their final therapy sessions and assessments time-points before the
investigators can begin analysing the data and writing articles to publish the results.
Contact Details: Dr Tracey Evans, REACH Clinical Research Coordinator, (07) 3069 7365, QCPRRC@uq.edu.au.
This project is funded by NHMRC Project Grant 1078877.
Chief Investigators: Prof. Roslyn Boyd, Prof. Jenny Ziviani, Dr Leanne Sakzewski, Prof. Iona Novak, Prof. Nadia Badawi,
Dr Kerstin Pannek, Prof. Catherine Elliott, Dr Sue Greaves, A/Prof. Andrea Guzzetta, Dr Koa Whittingham, Dr Natalie
Maitre, Dr Jill Heathcock, Dr Bernadette Gillick, Dr Young-min. Kim.

VISIBLE: Vision Intervention for Seeing Impaired Babies: Learning through Enrichment
VISIBLE is a pilot randomised controlled trial that will assess the feasibility of a vision-awareness program
actively engaging parents in enriching their baby’s vision and development. The home-based program of goal
directed early intervention is supported by a multidisciplinary team through parent training and fortnightly home
or telehealth visits. The daily intervention activities are provided by the parents and focus on environmental
enrichment and targeted vision-aware developmental goals. Behavioural assessments are completed to
evaluate the program efficacy on vision, motor, and general developmental function. The five recruiting sites
9

REACH: https://qcprrc.centre.uq.edu.au/reach

8



Dr Swetha Philip working with VISIBLE participant.

(Pisa, Queensland, New South Wales, Victoria and Western
Australia) will utilise existing early detection and intervention
networks to ensure successful completion of the study. Six
infants have been recruited in Queensland through the
QEDIN-CP (Queensland Early Detection and Intervention
Network – Cerebral Palsy). During COVID-19 restrictions,
researchers developed an instructional video for parents so
they could video-record their infant’s visual functions at home.
This video was then assessed by paediatric ophthalmologists
to assess if the infant was eligible for the study. Now
developed, this telehealth assessment method will continue to
be utilised for families that live in remote areas.

Contact Details: Dr Tracey Evans, VISIBLE Clinical Research Coordinator, (07) 3069 7365, QCPRRC@uq.edu.au.
This project is funded by Cerebral Palsy Alliance.
Chief Investigators: Prof. Roslyn Boyd, Prof. Andrea Guzzetta, Prof. Iona Novak, Dr Cathy Morgan, Dr Alison Salt, Prof.
Cath Elliott, Prof. Glen Gole, Dr Swetha Philip, Prof. Nadia Badawi, Prof. Stephen Rose, Dr Jurgen Fripp, Dr Kerstin
Pannek.

RBCC study: Relationship between Brain Structure and Cerebral Visual Impairment in
Children with Cerebral Palsy - a Prospective Cross sectional Study of an Australian
Cohort.
Vision is an important aspect, required not only for seeing but also for communication, navigation,
understanding the surrounding environment and giving an emotional value to what is seen/appreciated. RBCC
study is a study aimed to understand the visual behaviour and needs of children with an early brain injury and
diagnosis of cerebral palsy (CP)/ high risk of cerebral palsy. Available literature in the scientific domain
indicates that upto 70% of children with early brain injury and CP have visual problems such as problems with
recognition, orientation, crowding and attention.
RBCC study is recruiting children between 3 months corrected age and ≤14 years of age, with a diagnosis of
cerebral palsy/ high risk of cerebral and an MRI scan already performed as part of the clinical diagnosis. To
date 31 study participants have been recruited into this study. This study is being conducted at the Queensland
Paediatric Rehabilitation Centre, Queensland Children’s Hospital, Brisbane, Queensland.
Contact Details: Dr Swetha Philip (PhD Candidate), swetha.philip@uq.edu.au.
This project is funded by UQ Higher Degree Research Scholarship.
Chief Investigators: Dr Swetha Philip (PhD Candidate), Prof. Roslyn Boyd, Prof. Glen Gole, and Dr Priya Edwards.

Wearable Sensors: Study of Infant General Movements
Qualitative assessments of infant spontaneous general movements can be performed to measure
neurodevelopmental status and provide early insight into the presence of any abnormalities. Clinical
assessments of infant movements at 12 weeks post term age are up to 98% predictive of the eventual
development of cerebral palsy, but their reach is often limited to infants already identified as high-risk within
the traditional healthcare system.
A new study using new wearable sensor technology developed
by CSIRO is designed to measure patterns of movement in
young infants around 3 months (12-16 weeks C.A.) which may
give insight into how their brain is developing. Measuring these
patterns may help identify infants who are developing more
slowly and may require help earlier than they would otherwise.
This study seeks both healthy babies born at term (between 3841 weeks gestation) who did not have any complications prior,
during, or directly following delivery and infants with neonatal risk
factors that place them at risk of cerebral palsy. Participation in
the study involves visiting the Child Health Research Centre A wearable motion sensor used to measure infant
(CHRC) for four (4) different visits. We will place small sensors movements that my help augment existing clinical

assessments and facilitate earlier diagnosis of CP.
9



and reflective markers on your baby’s hands, feet, chest, and forehead to measure how they move over a
short period of time. We will also take video of the baby’s movements to compare to the data that we collect
using the sensors.
Recruitment of participants is well underway from Queensland Children’s Hospital, Royal Brisbane & Women’s
Hospital, in collaborations with researchers from The University of Queensland and CSIRO.
Contact Details: Dr Christian Redd, Principal Investigator, (07 3253 3612 / 0419 232 637, christian.redd@csiro.au;
Dr Tracey Evans, Clinical Trials Coordinator, (07) 3069 7365, t.evans3@uq.edu.au.
This project is funded by the Advance Queensland Innovation Partnerships Program Grant 16-103.

Early PACT10: Parenting Acceptance and Commitment Therapy of Infants Under 2 Years.
Recruitment continues for our Early Parenting Acceptance and Commitment Therapy (Early PACT) study. So
far we have recruited 19 families to this novel study. Early PACT was developed for parents of infants (<24
months) identified as at high risk of CP. The development of Early PACT involved interviews and feedback
from families who received an early diagnosis of CP risk regarding the feasibility of the supportive Parenting
Acceptance Commitment Therapy (PACT) strategies at the time of early diagnosis (Dickinson, Sheffield, Boyd,
& Whittingham). These families guided the development of Early PACT content and the elements of PACT
most applicable for delivery at this earlier time. We predict that Early PACT will have benefits to both parents
and the infant and enhance 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 at high risk of CP worldwide.
The recently completed PACT study is an RCT of an online intervention with families of children (2-10 years)
with CP. We developed PACT into an online course called PARENT101 Parenting with Purpose using the EdX
Edge platform. Grounded in the Acceptance and Commitment Therapy (ACT) model, PARENT101 supports
parents to become psychologically flexible, with full awareness of the present moment, in accordance with
their personal values. The content of the course includes short videos, text, online activities, moments of
reflection, guided mindfulness, acceptance and compassion exercises and a moderated discussion board.
Early PACT is now available to parents (including adoptive, step parent or legal guardian) of an infant under 2
years of age, who has been diagnosed with or is at high risk of CP. This study is testing an online course so
you need to have: reliable internet access, a mobile phone (text messages are part of the course), and basic
computer and internet literacy.
Contact Details: Dr Catherine Mak, Post-doctoral Research Officer, earlypact@uq.edu.au.
This project is funded by the Cerebral Palsy Alliance.
Chief Investigators: Dr Koa Whittingham, Dr Jeanie Sheffield, Prof. Roslyn Boyd, and Dr Catherine Mak.

Child Studies:
HABIT-ILE11: Randomised controlled trial of Hand Arm Bimanual Intensive Training
Including Lower Extremity Training for children with bimanual cerebral palsy

HABIT-ILE participant enjoying activities with
therapist during camp.

10
11

In Australia, 35,000 people have cerebral palsy (CP), and
between 60-70% of these people have difficulties with
movement on both sides of their body (bilateral CP). We don’t
yet have strong research evidence to support intensive
therapy for children with bilateral CP to improve their ability to
use their hands, walk and perform daily life tasks that are
important to them or that they need to do. HABIT-ILE is based
on state-of-the-art science in neuroplasticity and motor
learning for children with bilateral CP. The therapy was
developed by Professor Yannick Bleyenheuft, Chair of
Neurophysiological Evidence in Intensive Neurorehabilitation,

Early PACT study: https://qcprrc.centre.uq.edu.au/project/earlypact
HABIT-ILE: https://qcprrc.centre.uq.edu.au/project/habitile

10



Institute of Neuroscience at UC Louvain in Belgium. With over $1 million funding support from the Australian
National Health and Medical Research Council (NHMRC), this study is designed to test if HABIT-ILE is effective
at improving hand function and gross motor function. We are also going to use special functional Magnetic
Resonance Imaging (MRI) to whether HABIT-ILE induces neuroplastic changes in the brain.
HABIT-ILE is delivered as a “day camp” model (6.5 hours a day for 10 days around the school holidays – a
total of 65 hours of therapy!). Each camp will involve 10-12 children and therapy will be based on the child’s
motor abilities, age, interests and self-identified goals. This includes play, craft, cooking, everyday living skills,
gaming technologies and practice of goal activities and physical activities. Since commencement, the study
has attracted much interest from families and had received attention in 2019 from 10 News First Queensland
- the segment is available on the 10 News Queensland Facebook page12.
Recruitment is being finalised for the next camp intake for HABIT-ILE Camp in which children 6-16 years of
age with bilateral CP (where both sides of the body are affected, usually called ‘diplegia’, ‘triplegia’ or
‘quadriplegia’) are being invited to participate for the Brisbane site. The next scheduled camps will be held
during school holiday periods in January and June/July, 2021.
Wearable motion sensors will also be used to measure children’s movements that may help augment existing
clinical assessments and facilitate better understanding of how much physical activity occurs during ‘intensive
therapy’.
Contact Details: For recruitment and general enquiries, contact the team at habitile.qcprrc@uq.edu.au.
This project is funded by NHMRC 1144846.
Chief Investigators: A/Prof. Leanne Sakzewski, Prof. Roslyn Boyd, Prof. Yannick Bleyenheuft, Prof. Iona Novak, Prof.
Catherine Elliott, Dr Cathy Morgan, Dr Kerstin Pannek.

Preschool HABIT-ILE: A randomised controlled trial to determine efficacy of intensive
rehabilitation compared to usual care to improve motor skills of children, aged 2 to 5 years,
with bilateral cerebral palsy
Based on the success of HABIT-ILE, Associate Professor Leanne Sakzewski has been further awarded
$150,000 (2020 – 2022) from The Clive and Vera Ramaciotti Foundation (Ramaciotti Health Investments
Grant), to boost her work on the Pre-School HABIT-ILE ‘Intensive rehabilitation to improve motor skills of
children, aged 2 to 5 years, with bilateral cerebral palsy’.
Six hundred children are diagnosed with cerebral palsy (CP) each year, with >35,000 people living with CP in
Australia. Over 61% of children with CP have “bilateral” motor involvement, impairing movement on both sides
of the body. Evidence to support the efficacy of current treatments to improve motor outcomes is limited. This
project aims to investigate a new treatment approach that targets training both the left and right arms and legs.
This treatment is called Hand Arm Bimanual Intensive Training Including Lower Extremity, or HABITILE. We
already have evidence that this approach is effective for older school-aged children (6-16yrs) with bilateral CP.
Yet children with CP reach 90% of their gross motor/movement potential by 5 years of age so an earlier
intervention is needed to maximize the opportunity for their developing brains to learn how to move. To address
this, we will test the effectiveness of Preschool HABIT-ILE in the first randomized controlled trial for children
with bilateral CP aged 2 to 5 years. Outcomes are expected to transform current therapeutic approaches and
significantly improve the quality of life for these children.
Preschool HABIT-ILE is a motor learning approach simultaneously addressing coordination of the upper and
lower limbs. We will deliver a total doses of 40 hours of Preschool HABIT-ILE and it will be achieved through
a 2 week groups program delivered for 4 hrs/day over 10 days. Home program activities will be provided for
children and families to practice at home and it is anticipated that this will provide an additional 10 hours of
therapy over the 2 week period. Each group will involve 4 to 6 children and intervention will be based on the
child’s motor abilities, age, interests and the priority goals identified by their parents.
Contact Details: For recruitment and general enquiries, contact the team at habitile.qcprrc@uq.edu.au.
This project is funded by The Clive and Vera Ramaciotti Foundation.
Chief Investigators: A/Prof. Leanne Sakzewski, Dr Sarah Reedman, Ms Kate McLeod, Ms Megan Thorley, Mrs Andrea
Burgess, Prof. Stewart Trost, Mr Matthew Ahmadi, Dr David Rowell, Prof. Yannick Bleyenheuft, Prof. Roslyn Boyd.

12

HABIT-ILE on 10 News: https://www.facebook.com/10NewsQLD/videos/1205603096268506

11



Participate-CP13, a response to low physical activity in children with cerebral palsy
Most Australian children do not get enough physical activity each day for growth and healthy development. In
the recent 2018 Active Healthy Kids Australia Physical Activity Report Card, Australia scored a D- for overall
physical activity level, placing us in a tie for 32nd place out of 49 participating countries. Children with cerebral
palsy (CP) are particularly at risk for low levels of physical activity and low rates of participation in community
sports and physical recreation. Effective ways to promote physical activity in children with CP are desperately
needed. Participate-CP, a model of participation-focused therapy to promote participation in physical activities
has been developed to respond to this emerging problem. Participate-CP recognises the role of environmental
factors in restricting participation for youth with disabilities. Therapists assist families to set meaningful goals
around their child’s participation and employ strategies to overcome barriers.
Thirty three participants have now been recruited to the Participate-CP study across sites in Perth, Sydney,
Brisbane and Cairns. Children have been working on achieving physical activity participation goals including
riding a bike to and from school, and running at the park. Two new Brisbane therapists, Ceri Hitchcock and
Alex Lauer, will begin seeing participants locally from mid-July. Participate-CP is all about tackling tricky
barriers that families face when their child with CP wants to participate in sports and physical activities. If you
think Participate CP could benefit your child (between ages of 8-14 years), has a confirmed diagnosis of
cerebral palsy, and are classified at GMFCS levels I, II, III or IV, then please get in touch! The therapist travels
to you in your home and community, so there is no need to worry about transport to our research centre.
Contact Details: Dr Natalie Dos, Study Coordinator, (07) 3069 7356, participqte.qcprrc@uq.edu.au.
This project is funded by NHMRC 1140756.
Chief Investigators: A/Prof. Leanne Sakzewski, Prof. Catherine Elliott, Prof. Roslyn Boyd, Prof. Jenny Ziviani, Prof. Iona
Novak, Prof. Stewart Trost, Prof. Annette Majnemer.

PREBO-614: Prediction of childhood Brain Outcomes in infants born preterm using
neonatal MRI and concurrent clinical biomarkers
Infants born preterm are at risk of adverse long-term neurodevelopmental outcomes, including cognitive (3060%), behavioural (45%) and motor deficits (including cerebral palsy, CP, 5-10%). These adverse outcomes
can significantly impair social and educational functioning and quality of life. The team has established an
unique cohort (n=178) of infants born very preterm (<31 weeks postmenstrual age, PMA) with early neonatal
advanced MRI (30-32 weeks PMA) and concurrent clinical biomarkers. The team are now comparing these
early trajectories to motor, cognitive, executive function, behaviour, educational achievement, screening for
autism and brain structure (sMRI, dMRI, fMRI, EEG) at early school age (6 years CA). This is important as
intellectual, learning and behavioural outcomes are only able to be fully evaluated later in childhood.
Additionally, a diagnosis of CP may not be confirmed until after 2 years CA. The new PREBO-6 project will
enable: (i) parents and caregivers to have earlier, accurate prognostic information; (ii) clinical researchers will
have comprehensive tools to assist the rational development and testing of neuroprotection, neurorestoration
and neurorehabilitation interventions. (iii) Infants at risk of neurodevelopmental delay, CP and autism will be
detected earlier, leading to (iii) earlier implementation of targeted interventions aimed at improving
neurodevelopmental outcomes; and (iv) a reduction in neurodevelopmental disability and its high financial
costs to individuals, families and society.
As a follow-up study to the PREBO (involving infants up to 24 months) project, PREBO-6 will involve children
at 6 years of age. Support for travel and accommodation will be offered to families travelling from regional and
rural Queensland, interstate, or New Zealand. Each child will receive a comprehensive assessment of their
development and parents will be provided with a report. This report can also be made available to your child’s
Paediatrician/GP. Recruitment for the study is well underway and we have had 45 families from all over
Australia and New Zealand participate in the study.

13
14

Participate-CP: https://qcprrc.centre.uq.edu.au/participate-cp
PREBO-6: https://qcprrc.centre.uq.edu.au/article/2019/07/prebo6

12



There are three parts to this study which will be offered over 2
days:
1. Movement, learning and language assessments (including parent
questionnaires) (preterm born children only)
2. EEG (recording brain activity)
3. MRI (brain scan)
Contact Details: Dr Joanne George, Team Leader PREBO6, (07)
3069 7371, j.george2@uq.edu.au.
This project is by NHMRC New Investigator Grant 1161998.
Chief Investigators: Dr Joanne George, Dr Alex Pagnozzi, A/Prof. S
Bora.
PREBO6 Research Champion working with electroencephalogram (EEG) experts to assess brain activity.

PREDICT CP15: Implementation of comprehensive surveillance to Predict outcomes for
children with Cerebral Palsy
The PREDICT CP study, which is a continuation of the CP Child Study and the
Growth, Nutrition and Physical Activity Study (GNPA), aims to explore the
relationship between brain development and physical capacity, growth, physical
activity, communication, cognition, participation, and educational outcomes of
children who have CP. This important information will enable us to build
prediction models that will allow us to develop timely and effective interventions
and predict future outcomes for children with CP. Families with children born in
Queensland, aged between 8-12 years (born in the birth years 2006-2011), are
invited to take part in the PREDICT CP study at the Centre for Children’s Health
Research (CCHR), South Brisbane.
Information from the study will help children with cerebral palsy and their families
in the future. Summary information on your child will be reported back to you
after this one-off assessment, which will be conducted over 1-1.5 days. Support
for travel and accommodation will be provided for families travelling from regional
and rural Queensland or interstate.

PREDICT research champion playing a
board game as part of the upper limb
assessment.

We have now had 91 families from all over Queensland and northern New South Wales attend the one-off
comprehensive assessment. ‘Thank you’ to all of these families for your time and support of this study;
recruitment is coming to an end and will close end of November 2020.
Contact Details: Dr Shaneen Leishman, Clinical Research Coordinator, (07) 3069 7354, QCPRRC@uq.edu.au.
This project is funded by NHMRC Partnership Grant 077257.
Chief Investigators: Prof R Boyd, Prof P Davies, Prof J Ziviani, Prof. S Trost, Dr L Barber, Dr R Ware, Prof S Rose, Dr K
Whittingham, Dr K Bell.

SMART16: Strengthening Mental Abilities through Relational Training
Cerebral palsy (CP) is typically associated with motor impairments, but nearly half of all children with CP also
experience cognitive impairment, potentially impacting educational and vocational achievement. While there
is growing awareness of these challenges, interventions for CP have typically focused on improving physical
activity, limb function, and participation in daily living activities. Having identified the gap in the range of
interventions for CP, research teams at UQ’s Faculty of Medicine and Faculty of Health and Behavioural
Sciences have co-developed a randomised controlled trial: Strengthening Mental Abilities Through Relational
Training (SMART), which aims to test the effectiveness of a novel online cognitive program for children with
mild to moderate CP. SMART is founded upon relational frame theory, which suggests that language and
complex thinking are underpinned by our ability to understand relationships between objects, known as
relational framing. If efficacious, an online program designed to train relational framing ability and potentially
improve complex reasoning would be a cost-effective intervention, accessible from home for children with CP.
15
16

PREDICT CP: https://qcprrc.centre.uq.edu.au/predict-cp
SMART : https://qcprrc.centre.uq.edu.au/project/smart-strengthening-mental-abilities-through-relational-training

13



All participants in the SMART study will gain access to the web-based SMART training program that can be
completed from home, over laptop, PC or tablet either immediately or after 6 months. Participants will receive
training in relational framing through an online, user-friendly platform. Children answer problems and receive
immediate feedback during 30-minute online training sessions, three times a week for approximately 12 weeks.
Participants will be randomly assigned to an intervention group or waitlist control, so that all participants will
receive access to the program by the end of the study. A comprehensive psychological assessment will be
completed before beginning the study, at 20 weeks after beginning, and again at 40 weeks.
Jane Wotherspoon, Clinical Psychologist is undertaking this for her PhD research, has published the study
protocol in BMJ Open in June 201917. Recruitment for this clinical trial is well underway through QCPRRC and
we aim to complete recruitment by December 2020, with data collection finalised by June 2021.
This study is open to children living in Queensland who meet the following criteria:



Children aged from 8 to 12 years of age, with mild to moderate Cerebral Palsy (GMFCS I-IV, who are
able to access an online program and perform tasks on an iPad, tablet, Mac or PC, and able to attend
three assessment sessions at the Centre for Children’s Health Research in Brisbane.
Children with unstable epilepsy or brain injury; children currently undergoing active medical treatment
(chemotherapy, radiotherapy or neurosurgical treatment) are excluded.

For more info about SMART and contact details: Jane Wotherspoon, (07) 3069 7367, j.wotherspoon@uq.edu.au.
This project is funded by the Australian Postgraduate Award (APA) Scholarship.
Chief Investigators: Jane Wotherspoon, Dr Koa Whittingham, Dr Jeanie Sheffield, and Prof. Roslyn Boyd.

Imagine CP: Genome and Connectome Study
QCPRRC in collaboration with the Queensland Brain Institute, has obtained funding to identify genetic risk
factors that contribute to CP. The Imagine CP study will examine relationships between genetic factors, brain
structure and functional outcomes in children with the condition. A genetic basis of CP is suspected in up to
30% of CP cases. As has been shown with other neurodevelopmental disorders (e.g. Autism, Epilepsy,
Intellectual disability), genetic insights have the potential to provide a framework for understanding the
neurobiological pathways that lead to CP. Imagine CP is obtaining a blood, saliva, or buccal sample from
children and adults with CP (aged 30 years and under), as well as their parents. Recruitment is well underway
and we have collected samples from 56 families to date. Once all samples have been collected, DNA will be
extracted and analysed in search of genes of possible importance to CP. We will search for changes that occur
in children with CP but not in their parents. This can help to identity new mutations, or changes, in genes that
may be linked with CP. This will provide new insights into our understanding of CP, and in the era of
personalised medicine, may led to personalised treatment for children with CP.
Contact Details: Dr Shaneen Leishman, Research Coordinator, (07) 3069 7354, QCPRRC@uq.edu.au.
This project is funded by Cerebral Palsy Alliance Project Grant PG5115.
Chief Investigators: A/Prof. M Wright, Prof. R Boyd (QCPRRC), Prof S Rose (CSIRO), A/Prof. Michael Fahey (Monash).

Studies concluded
We have concluded our FAST-CP, MIYOGA, ACTIVATE-CP, Particpate-1, Friends randomised clinical trials
with several new publications. Please see Publications section, or past studies18, for further details.

17
18

SMART Protocol Publication: https://bmjopen.bmj.com/content/9/6/e028505.full
Studies concluded: https://qcprrc.centre.uq.edu.au/past-studies

14



Our Output & Achievements
Grant & Funding Successes
EU-Horizon 2020 - Australia NHMRC Program funding success
The Born-to-get-there Consortium has been awarded an EU Horizon Grant 2020 - 2025 Euro 3.5M including
sites in Italy, Holland, Denmark, Georgia, Sri Lanka, and Remote/Indigenous Australia. Subsequently, Prof.
Ros Boyd and Dr Kath Benfer have been awarded an additional A$0.5M from the NHMRC, serving as the
Australian-arm of the program to conduct and implement the research in QLD and WA.
The overarching aim of the Born-to-get-there program is to exploit current evidence on early detection,
characterisation and intervention for infants at high risk of Cerebral Palsy (CP) by implementing the first
International Clinical Practice Guideline in multiple sites in Europe (Italy, Denmark, Netherlands), in low and
middle-income countries (Georgia, Sri Lanka) and hard to reach populations (Remote Queensland, QLD and
Western Australia, WA).
Specifically, we will improve maternal and infant health through the following three specific aims.


Aim 1: to improve health programs for the early detection (ED) of CP, in a context-specific way,
thereby reducing age at diagnosis and age at referral to CP-specific early intervention programs.



Aim 2: to improve health programs for the early surveillance (ES) of associated impairments
and functional limitations in infants with CP and mental health of their parents, in a context
specific way, thereby fostering individualised early intervention delivery and prevention of secondary
complications (e.g. hip dislocation) for infants, and provision of support for their parents.



Aim 3: to improve health programs of early intervention (EI) in infants with CP, in a contextspecific way, thereby improving the outcomes of the infants (motor, cognitive and social-emotional
development) and of their caregivers (mental health).

Members of the Born-To-Get-There consortium

Perpetual IMPACT Philanthropy funds LEAP-CP Aboriginal and Torres Strait Islander
project in Queensland
Prof. Roslyn Boyd and Dr Katherine Benfer, who has been leading the LEAP-CP program, have been further
awarded $100,000 support from Perpetual IMPACT Philanthropy Funds to further extend the program to North
Queensland, focusing on working with Aboriginal and Torres Strait Islander communities.
Post-neonatal cerebral palsy is five times more likely in Indigenous than non-Indigenous Australian infants.
LEAP-CP (Learning through Everyday Activities with Parents) aims to identify and to test the effectiveness of
a peer-delivered culturally adapted early intervention for Aboriginal Torres Strait Islander infants at risk of CP
in remote and disadvantaged communities in Queensland. The intervention includes parent education, goaldirected strategies and learning games, with the parent as the key change agent. The award will be
predominately used to fund two Paediatric Physiotherapy positions in the Cairns and Townsville Neonatal
Intensive Care Units to identify eligible Aboriginal and Torres Strait Islander families to be invited to the LEAPCP surveillance for early intervention study. Perpetual is an ASX-listed, diversified financial services company
which has been serving Australians since 1886.

15



Professor Roslyn Boyd awarded NHMRC Investigator Grant 2021 - 2025
QCPRRC Scientific Director Prof. Roslyn Boyd has been successful in the most recent round of NHMRC
Investigator Grants, for her work focusing on the early detection and intervention for infants with cerebral palsy.
With a long successful international track record in conducting randomised clinical trials in the field of cerebral
palsy (on the efficacy of upper limb rehabilitation, early intervention and Botulinum toxin A), Prof. Boyd’s
program of work focuses on the national implementation of the early detection of infants at risk of Cerebral
Palsy (CP) and fast tracking families to clinical trials to test the efficacy of neurorehabilitation. Her program
uniquely combines neuroscience and neuro-restorative rehabilitation for infants/children with CP. Prof. Boyd
has built strong collaborations in neuroscience which have enabled the development of novel rehabilitation
trials in Action Observation training, multi-modal web based training (Qld E Brain program) and environmental
enrichment for infants, children and youth with cerebral palsy.
Cerebral palsy results from a deficit or lesion of the immature brain. As yet there is no cure, so prevention,
interrupting or mitigating the initial causative event or restorative rehabilitation holds hope for advancement in
this field. The rate (1 in 700) and severity (66% now walk) have declined as reported on our Australian CP
Register (ACPR). The functional limitations for children with CP are lifelong and costly 0.14% GDP. There is
early evidence from my randomised clinical trials that neurorehabilitation can modulate brain reorganisation
and lead to improved functional outcomes in children with CP. Current rehabilitation models are frequently not
delivered early enough or at intensities sufficient to promote neuro-plastic changes. Advanced neuroimaging
provides quantitative information about the extent of injury, and relationship to function enabling better
prediction of outcome in large cohorts of children with CP and infants born preterm. Quantitative measures
such as functional MRI, Diffusion Imaging, NODDI and Functional Connectivity are used to measure
neuroplastic changes associated with new neurorehabilitation strategies. The research program will test
clinical trials of novel training in infants (REACH, VISIBLE, GAME), environmental enrichment (Parenting),
intensive neurorehabilitation (HABITile) and a program tailored to indigenous communities (LEAP-CP).
Outcomes of my program will provide efficacy of early interventions for infants at high risk of CP, at the right
time, impacting motor and cognitive outcomes and parent mental health comprehensively tested against
established population cohorts and the ACPR.

Dr Jo George recipient of 2020 Mary McConnel Career Boost Program for Women in
Paediatric Research
Dr Jo George is one of the four proud recipients of the 2020 Mary McConnel Career Boost Program for Women
in Paediatric Research. The prestige award, name after Mary McConnel, who established the first children’s
hospital in Queensland (the second in Australia after the Royal Children’s Hospital in Melbourne) in 1878, aims
to offer support to outstanding female researchers to increase research delivery and dissemination and
therefore ‘boost’ the researcher’s track record and competitiveness for future funding.
Dr George, Advanced Research Physiotherapist at the QCPRRC team, will use the funds to support her project
‘Advancing early detection biomarkers in infants at risk of adverse neurodevelopmental outcomes and cerebral
palsy following early brain injury’, which General Movements and Motor Optimality Score analyses will be
conducted to a cohort of infants for earlier, more accurate identification of CP.

Child Health Research Centre Travel Grant
Two of our Early Career Research Fellows, Dr Catherine Mak and Dr Sarah Reedman, had been successful
in securing Travel Grants from the Child Health Research Centre, Faculty of Medicine, The University of
Queensland, at the end of 2019. Dr Mak used the funding support to attend the American Academy for
Cerebral Palsy and Developmental Medicine (AACPDM) Conference 2019, Anaheim USA. As a joint
presentation with Prof. Roslyn Boyd at AACPDM, Dr Mak presented a workshop on ‘Supporting parents of
infants identified as at risk of cerebral palsy through Parenting and Mindfulness-based Approaches’.
Dr Sarah Reedman had used the funds to attend the 2020 Australasian Academy of Cerebral Palsy and
Developmental Medicine (AusACPDM), in Perth, March 2020.

16



Conferences & Presentations
10th Biennial Australasian Academy of Cerebral Palsy and Developmental Medicine
Conference
The 10th Biennial Australasian Academy of Cerebral Palsy and
Developmental Medicine (AusACPDM) conference was held 11 – 14
March 2020 in picturesque Perth, Australia. With ‘Visionary’ as the
theme of the conference, the conference aimed to embolden
participants to be Visionaries in their practice and research, leading to
future-focused Visionary outcomes for the children and families they
work with. It was intended that the Conference will provide new insights
and ways of thinking, opportunities to learn new practice and research
approaches, and build opportunity for community engagement.

Members of the QCPRRC and AusCP-CTN
team at the AusACPDM Welcome Reception (L
– R: Megan Kentish, Dr Cathy Morgan, A/Prof.
Leanne Sakzewski, and Rose Gilmore.)

As an invited keynote speaker for the Dinah Reddihough Oration, Prof.
Roslyn Boyd’s presentation a keynote focusing on collaboration to
answer the important questions in the field of cerebral palsy. Across the QCPRRC and AusCP-CTN teams,
several workshops, oral presentations and posters were presented across the three days, including: Prof.
Roslyn Boyd and A/Prof. Leanne Sakzewski “Active ingredients of participation and activity-based
rehabilitation”, Rose Gilmore “The Friends Project: Optimising social competency in youth with acquired brain
injuries and cerebral palsy: A randomised controlled trial”, Dr Cathy Morgan “The pooled diagnostic accuracy
of three tests for diagnosing cerebral palsy early in high risk infants: a case control study”, Dr Sian Williams ‘A
delayed diagnosis? Preliminary findings of clinician practice and family experience of diagnosis of cerebral
palsy in New Zealand’, and Dr Swetha Philip “Cerebral visual impairment in children with cerebral palsy: from
evidence to best practice”.
Prof. Roslyn Boyd was delighted to announce the first winner of the
international Elsass Research Prize19, which is granted by The Elsass
Foundation that was established in 1975 by Helene Elsass, who herself had
cerebral palsy. The prestigious prize was awarded to our long-time
collaborator, Professor Bernard Dan, who has dedicated his medical training
and research career in knowledge dissemination and advancing intervention
and rehabilitation methodologies to improve the quality of life for people with
cerebral palsy. Prof. Dan is a Professor in neuroscience at the Université libre
de Brussels, and Medical director at Inkendaal Rehabilitation Hospital in
Brussels (highly specialised hospital for children and adults with severe brain,
heart, and lung diseases).

Professors Roslyn Boyd and Bernard Dan.

QCPRRC’s Dr Sarah Reedman was awarded the 'Best Poster Award' at the 2020
AusACPDM conference. Sarah's poster entitled "What's in the "Black Box" of a
participation-focused intervention?" described the top tools used by a
physiotherapist to promote participation in sports and physical activities in the
community in children with cerebral palsy. Sarah's study was unique in using a
behavioural framework to assess and target physical activity in rehabilitation
medicine. For collaborative opportunities with Dr Reedman and more info on the
project, please contact s.reedman@uq.edu.au.
Despite the logistic difficulties due to COVID-19 pandemic, the AusACPDM
conference committee hosted a superb conference.
More information about the conference and the program are now available to view
online20.
Dr Sarah Reedman, proud awardee
of the AusACPDM 2020 Best Poster
Award.
19
20

The Elsass Research Prize: https://elsassfonden.dk/om-elsass-fonden/prisuddelinger/research-prize/
2nd IAACD / 73rd AACPDM 2019: https://www.aacpdm.org/meetings/2019/

17



IACP:21 Prof. Roslyn Boyd invited as Keynote Speaker for 2020 India Academy of Cerebral
Palsy Webinar
The Indian Academy of Cerebral Palsy (IACP) is a national body consisting of pioneers drawn from different
regions and specialties across the country. The IACP aims to empower and contribute to the welfare of
persons with cerebral palsy and related neuro developmental disabilities and their families at all socio
ecological levels. Its formation was made possible mainly due to the sincere efforts of Dr Anirudh K. Purohit.
In collaborations with colleagues at IACP, Prof. Roslyn Boyd was proudly invited as a Keynote speak for the
webinar series, presenting “Answering the important questions in the field of Cerebral Palsy: What should
clinicians be doing in 2020?”. Webinar can be viewed on AusCP-CTN CRE Webinar Series website.

New Publications from QCPRRC
Self-care performance in children with cerebral palsy: a longitudinal study
Andrea Burgess, Roslyn N Boyd, Mark D Chatfield, Jenny Ziviani, Leanne Sakzewski. Developmental
Medicine & Child Neurology. (2020)Sep;62(9):1061-1067. Doi: 10.1111/dmcn.14561
AIM: To investigate self-care developmental trajectories in children with cerebral palsy (CP) across all
functional ability levels, according to Manual Ability Classification System (MACS) levels.
METHOD: This was a prospective longitudinal population-based study of 71 children aged from 2 years 6
months to 12 years, with CP (47 [66%] males, 24 [34%] females). Pediatric Evaluation of Disability Inventory
(PEDI) measures were taken at 2 years 6 months, 3, 4, and 5 years, and the PEDI - Computer Adaptive Test
(PEDI-CAT) between 8 and 12 years. At 8 to 12 years, children were classified in MACS levels I (21; 30%), II
(22; 31%), III (16; 23%), IV (6; 8%), and V (6; 8%). Longitudinal analysis of the PEDI Functional Skills Scale
self-care and PEDI-CAT daily activities domains used the published linking equation, and multilevel mixedeffects regression modelling with interaction between age and MACS.
RESULTS: Between 5 and 12 years of age, children classified in MACS levels I to III continued to show
progress in self-care development (PEDI-CAT scaled scores estimated change per year: I, 0.72; II, 0.49; III,
0.48). Children classified in MACS level IV showed an upward non-significant trend between 5 and 8 to 12
years (estimated change 0.42; 95% confidence interval [CI] -0.04 to 0.88). Children in MACS level V showed
a decline in self-care (estimated change: -0.65; 95% CI -1.16 to -0.14).
INTERPRETATIONS: Self-care development attained by 8 to 12 years of age was related to the severity of
manual ability impairment. Application of the linking equation from PEDI to PEDI-CAT is somewhat uncertain
at the extreme lower end of the scale. Our study supports recommendations for items to be added to the PEDICAT to address floor effect.

Prediction of childhood brain outcomes in infants born preterm using neonatal MRI and
concurrent clinical biomarkers (PREBO-6): study protocol for a prospective cohort study
George JM, Pagnozzi AM, Bora S, Boyd RN, Colditz PB, Rose SE, et al.. BMJ Open. 2020;10(5):e036480.
doi: 10.1136/bmjopen-2019-036480
INTRODUCTION: Infants born very preterm are at risk of adverse neurodevelopmental outcomes, including
cognitive deficits, motor impairments and cerebral palsy. Earlier identification enables targeted early
interventions to be implemented with the aim of improving outcomes.
METHODS AND ANALYSIS: Protocol for 6-year follow-up of two cohorts of infants born <31 weeks gestational
age (PPREMO: Prediction of Preterm Motor Outcomes; PREBO: Prediction of Preterm Brain Outcomes) and
a small term-born reference sample in Brisbane, Australia. Both preterm cohorts underwent very early MRI
and concurrent clinical assessment at 32 and 40 weeks postmenstrual age (PMA) and were followed up at 3,
12 and 24 months corrected age (CA). This study will perform MRI and electroencephalography (EEG).
Primary outcomes include the Movement Assessment Battery for Children second edition and Full-Scale IQ
21

IACP: https://iacp.co.in/

18



score from the Wechsler Intelligence Scale for Children fifth edition (WISC-V). Secondary outcomes include
the Gross Motor Function Classification System for children with cerebral palsy; executive function (Behaviour
Rating Inventory of Executive Function second edition, WISC-V Digit Span and Picture Span, Wisconsin Card
Sorting Test 64 Card Version); attention (Test of Everyday Attention for Children second edition); language
(Clinical Evaluation of Language Fundamentals fifth edition), academic achievement (Woodcock Johnson IV
Tests of Achievement); mental health and quality of life (Development and Well-Being Assessment, Autism
Spectrum Quotient-10 Items Child version and Child Health Utility-9D).

Predicting motor outcome in preterm infants from very early brain diffusion MRI using a
deep learning convolutional neural network (CNN) model.
Saha S, Pagnozzi A, Bourgeat P, George JM, Bradford D, Colditz PB, et al.. Neuroimage. 2020;215:116807.
DOI: 10.1016/j.neuroimage.2020.116807
BACKGROUND/AIM: Preterm birth imposes a high risk for developing neuromotor delay. Earlier prediction of
adverse outcome in preterm infants is crucial for referral to earlier intervention. This study aimed to predict
abnormal motor outcome at 2 years from early brain diffusion magnetic resonance imaging (MRI) acquired
between 29 and 35 weeks postmenstrual age (PMA) using a deep learning convolutional neural network (CNN)
model.
METHODS: Seventy-seven very preterm infants (born <31 weeks gestational age (GA)) in a prospective
longitudinal cohort underwent diffusion MR imaging (3T Siemens Trio; 64 directions, b = 2000 s/mm2). Motor
outcome at 2 years corrected age (CA) was measured by Neuro-Sensory Motor Developmental Assessment
(NSMDA). Scores were dichotomised into normal (functional score: 0, normal; n = 48) and abnormal scores
(functional score: 1-5, mild-profound; n = 29). MRIs were pre-processed to reduce artefacts, upsampled to
1.25 mm isotropic resolution and maps of fractional anisotropy (FA) were estimated. Patches extracted from
each image were used as inputs to train a CNN, wherein each image patch predicted either normal or abnormal
outcome. In a postprocessing step, an image was classified as predicting abnormal outcome if at least 27%
(determined by a grid search to maximise the model performance) of its patches predicted abnormal outcome.
Otherwise, it was considered as normal. Ten-fold cross-validation was used to estimate performance. Finally,
heatmaps of model predictions for patches in abnormal scans were generated to explore the locations
associated with abnormal outcome.
DISCUSSION/CONCLUSION: This study established the potential of an early brain MRI-based deep learning
CNN model to identify preterm infants at risk of a later motor impairment and to identify brain regions predictive
of adverse outcome. Results suggest that predictions can be made from FA maps of diffusion MRIs well before
term equivalent age (TEA) without any prior knowledge of which MRI features to extract and associated feature
extraction steps. This method, therefore, is suitable for any case of brain condition/abnormality. Future studies
should be conducted on a larger cohort to re-validate the robustness and effectiveness of these models.

Brain microstructure and morphology of very preterm-born infants at term equivalent age:
Associations with motor and cognitive outcomes at 1 and 2 years
Pannek K, George JM, Boyd RN, Colditz PB, Rose SE, Fripp J. Neuroimage. 2020;221:117163.
doi:10.1016/j.neuroimage.2020.117163
ABSTRACT: Very preterm-born infants are at risk of adverse neurodevelopmental outcomes. Brain magnetic
resonance imaging (MRI) at term equivalent age (TEA) can probe tissue microstructure and morphology, and
demonstrates potential in the early prediction of outcomes. In this study, we use the recently introduced fixelbased analysis method for diffusion MRI to investigate the association between microstructure and morphology
at TEA, and motor and cognitive development at 1 and 2 years corrected age (CA). Eighty infants born <31
weeks’ gestation successfully underwent diffusion MRI (3T; 64 directions; b = 2000s/mm2) at term equivalent
age, and had neurodevelopmental follow-up using the Bayley-III motor and cognitive assessments at 1 year
(n = 78) and/or 2 years (n = 76) CA. Diffusion MRI data were processed using constrained spherical
deconvolution (CSD) and aligned to a study-specific fibre orientation distribution template, yielding measures
of fibre density (FD), fibre-bundle cross-section (FC), and fibre density and bundle cross-section (FDC). The
association between FD, FC, and FDC at TEA, and motor and cognitive composite scores at 1 and 2 years
CA, and change in composite scores from 1 to 2 years, was assessed using whole-brain fixel-based analysis.

19



Additionally, the association between diffusion tensor imaging (DTI) metrics (fractional anisotropy FA, mean
diffusivity MD, axial diffusivity AD, radial diffusivity RD) and outcomes was investigated. Motor function at 1
and 2 years CA was associated with CSD-based measures of the bilateral corticospinal tracts and corpus
callosum. Cognitive function was associated with CSD-based measures of the midbody (1-year outcomes
only) and splenium of the corpus callosum, as well as the bilateral corticospinal tracts. The change in
motor/cognitive outcomes from 1 to 2 years was associated with CSD-based measures of the splenium of the
corpus callosum. Analysis of DTI-based measures showed overall less extensive associations. Post-hoc
analysis showed that associations were weaker for 2-year outcomes than they were for 1-year outcomes.
Infants with better neurodevelopmental outcomes demonstrated higher FD, FC, and FDC at TEA, indicating
better information transfer capacity which may be related to increased number of neurons, increased
myelination, thicker bundles, and/or combinations thereof. The fibre bundles identified here may serve as the
basis for future studies investigating the predictive ability of these metrics.

New Team Members
Helen Fitzmaurice is a new PhD student at QCPRRC, and will be completing her thesis
with A/Prof. Leanne Sakzewski and Dr Sarah Reedman, looking at intensive upper and
lower extremity training for children with bilateral cerebral palsy to improve gross motor
outcomes. Helen completed a Bachelor of Physiotherapy (Hons) degree at UQ and has
since been working at the Queensland Children's Hospital.
Find out more about Helen’s project: h.fitzmaurice@uq.edu.au.

Ella Macdonald is physiotherapy honours student who will be working with Dr Sarah
Reedman, contributing to a study on the reliability of the PLAYfun assessment tool in
children with cerebral palsy.

20



Upcoming events
Involving Consumers in Research
In collaboration with UQ’s Faculty of Medicine, the NHMRC Australasian Cerebral Palsy Clinical Trials Network
will be facilitating an online training ‘Involving Consumers in Research’, presented by Anne McKenzie
(Manager, Consumer Engagement, Consumer Advocate, Telethon Kids Institute).
Sign up to our AusCP-CTN CRE Education Program22 to be in the
know for upcoming courses.

AACPDM23: American Academy of Cerebral Palsy and Developmental Medicine 74th Live
Virtual Meeting, 23 – 26 September, 2020
The 74th AACPDM annual conference will be held virtually this year due to COVID pandemic, nevertheless
the program is bigger and more vibrant as ever. This year’s theme ‘Unmasking Potential’, the AACPDM
program committee is creating fresh, new opportunities for networking and collaboration with other
professionals passionate about enhancing the health and well-being of individuals with childhood-onset
disabilities around the globe. The conference will bring together researchers and health professionals from
all over the world to participate in pre-courses, scientific presentations, breakfasts, and instructional courses.
For program and registration to the conference: https://www.aacpdm.org/meetings/2020/program

SAVE THE DATE: 1 – 5 March 2022 Combined 11th AusACPDM and 3rd IAACD
Conference ‘Better Together’24
The Combined 11th Australasia Academy of Cerebral Palsy and Developmental Medicine and 3rd International
Alliance of Academies of Childhood Disabilities Conference will be held in the vibrant Melbourne city
(Melbourne Convention and Exhibition Centre), 1st to 5th March 2022. The conference will be host via a hybridmode, offering virtual and in-person attendances.
The Scientific Committee is currently calling for Focused Symposia and Current Debates/Controversies; for
more information about the conference: https://www.ausacpdm.org.au/events/combined-ausacpdm-andiaacd-conference-better-together-2022/

22

AusCP-CTN Education Program: https://cre-auscpctn.centre.uq.edu.au/education
AACPDM: https://www.aacpdm.org/meetings/2020/program
24
Combined AusACPDM and IAACD: https://www.ausacpdm.org.au/events/combined-ausacpdm-and-iaacd-conference-better-together2022/
23

21



Research projects at the QCPRRC are proudly supported by:

AusCP-CTN CRE partners:

DFDDFDDFDFDF

Contact details
Professor Roslyn Boyd
Scientific Director
Queensland Cerebral Palsy and Rehabilitation Research Centre
T +61 7 3069 7370
E qcprrc@uq.edu.au
W qcprrc.centre.uq.edu.au
CRICOS Provider Number 00025B

22


Fleepit Digital © 2020