2021 International Hot Topics in CP Research - Program Booklet

International Hot Topics
in Cerebral Palsy
Research Forum
5 March 2021

Australian Eastern Standard Time

WELCOME

FRIDAY 5 MARCH 2021

THE AUSTRALASIAN CEREBRAL PALSY CLINICAL
TRIALS NETWORK (AUSCP-CTN) IS PROUD TO
PRESENT THE 2021 INTERNATIONAL HOT TOPICS
IN CEREBRAL PALSY RESEARCH FORUM,
DELIVERED ONLINE VIA ZOOM
The event will unite key opinion leaders and
colleagues in the field from Finland, Norway, Italy,
USA, and of course our very own local experts
across Australasia. The one-day international forum
will showcase latest achievements and
advancement in early diagnosis and intervention to
improve outcomes for children with CP around the
world. We would also like to take the opportunity to
officially launch the free Jooay in Australia app connecting children with disabilities to leisure
activities in their local communities!
For more info:
cre-auscpctn.centre.uq.edu.au/
2021-AusCPCTN-HotTopics

International Hot Topics in Cerebral Palsy Research 2021 Program

1

INVITED KEYNOTE
SPEAKERS

A/Prof. Guro Andersen

Prof. Iona Novak

Os l o U n iv e rs i ty H o s p i ta l ; V e s tf o l d
H o s p i t a l T rus t , T ø ns b e r g , N o r w a y

C e re b ra l Pa l s y Al l ia nc e
Re s e a rc h I ns t i t u te

Dr Sandra Julsen Hollung
Os l o U n iv e rs i ty H o s p i ta l ; V e s tf o l d
H o s p i t a l T rus t , T ø ns b e r g , N o r w a y

Prof. Nadia Badawi AM
C e re b ra l Pa l s y Al l ia nc e
Re s e a rc h I ns t i t u te

A/Prof. Andrea Guzzetta

Olena Chorna

Prof. Rod Hunt

T he U n i v e rs i ty o f P is a , I ta l y

T he U n i v e rs i ty o f P is a , I ta l y

M o na s h H e a l t h

Prof. Sampsa Vanhatalo
H e l s i nk i U n i v e rs i ty H o s p i ta l

Natasha Garrity

Dr Shona Goldsmith

C e re b ra l Pa l s y Al l ia nc e Re s e a rc h
I ns t i t u te

C e re b ra l Pa l s y Al l ia nc e Re s e a rc h
I ns t i t u te

Prof. Yannick Bleyenheuft

A/Prof. Michael Fahey

P ro fe s s o r, I ns t i tu t e o f N e u ro s c ie nc e ,
U n i v e rs i té c a t h o l iq ue d e L o uv a i n,
B ru x e l l e s

M o na s h C h il d re n’s H o s p i ta l

Dr Sarah McIntyre
C e re b ra l Pa l s y Al l ia nc e Re s e a rc h
I ns t i t u te

International Hot Topics in Cerebral Palsy Research 2021 Program

2

PROGRAM
FRIDAY 5 MARCH 2021
Time (EST;

Time (CET;

Time (EET;

Time (AEDT;

Time (AEST;

UTC/GMT -5)

UTC/GMT +1)

UTC/GMT +2)

UTC/GMT+11)

UTC/GMT+10)

Speaker

Topic

Forum Opening & Introduction – Prof. Roslyn Boyd
1700-0705
Thu 4 Mar
1705-1715
Thu 4 Mar

2300-2305
Thu 4 Mar
2305-2315
Thu 4 Mar

0000-0005

0900-0905

0800-0805

Prof. Ros Boyd

Welcome & Introduction

0005-0015

0905-0915

0805-0815

Prof. Ros Boyd

AusCP-CTN CRE: Annual Report Card

Prof. Guro Andersen
Dr Sandra Hollung
Dr Shona Goldsmith
Dr Sarah McIntyre

Update from the Norwegian Quality and Surveillance
Registry for Cerebral Palsy (NorCP)

Plenary Keynotes – Chair: Prof. Nadia Badawi
1715-1745
Thu 4 Mar
1745-1815
Thu 4 Mar
1815-1845
Thu 4 Mar
1845-1850
Thu 4 Mar

2315-2345
Thu 4 Mar
2345-0015
Thu 4 Mar
0015-0045
Fri 5 Mar
0045-0050
Fri 5 Mar

1850-1715
1715-1945
Thu 4 Mar
1945-2000
Thu 4 Mar
2000-2015
Thu 4 Mar
2015-2030
Thu 4 Mar
2030-2045

0015-0045

0915-0945

0815-0845

0045-0115

0945-1015

0845-0915

0115-0145

1015-1045

0915-0945

Prof. Nadia Badawi

Prevention of CP: What else can we do?

0145-0150

1045-1050

0945-0950

Natasha Garrity

Official Launch - Jooay in Australia App

0050-0115

0150-0215

1050-1115

0950-1015

0115-0145

0215-0245

1115-1145

1015-1045

A/Prof. Michael
Fahey

0145-0200

0245-0300

1145-1200

1045-1100

Yana Wilson

0200-0215

0300-0315

1200-1215

1100-1115

Prof. Iona Novak

0215-0230

0315-0330

1215-1230

1115-1130

Prof. Rod Hunt

0230-245

0330-0345

1230-1245

1130-1145

Update from Australian CP register

Break
Update on Genomics of CP
ICPGC Updates: The CP Commons and Common Data
Elements
Stem Cells for Cerebral Palsy: Current State of the
Science
Neuroprotection for the Extremely Preterm Infant: A
potential role for stem cells
Break

International Hot Topics in Cerebral Palsy Research 2021 Program

3

PROGRAM
FRIDAY 5 MARCH 2021
Early Detection & Neonatal Clinical Trials – Chair: Prof. Roslyn Boyd
2045-2100
Thu 4 Mar
2100-2115
Thu 4 Mar

0245-0300

0345-1400

1245-1300

1145-1200

Anne te Velde

Understanding the Early Natural History of Cerebral Palsy
Study Update

0300-0315

0400-0415

1300-1315

1200-1215

Rachel Byrne

Implementation of Early Detection of CP in the USA

2115-2130
Thu 4 Mar

0315-0330

0415-0430

1315-1330

1215-1230

Dr Sian Williams

2120-2145
Thu 4 Mar

0330-0345

0430-0445

1330-1345

1230-1245

Prof. Jane Valentine

2145-2200
Thu 4 Mar

0345-0400

0445-0500

1345-1400

1245-1300

Dr Eliza Maloney
Clare Wiltshire

2200-2215
Thu 4 Mar

0400-0415

0500-0515

1400-1415

1300-1315

Carly Luke
Prof. Ros Boyd

2215-2245

0415-0445

0515-0545

1415-1445

1315-1345

The Cerebral Palsy Diagnosis Experience and Ensuing
Clinical Pathways: using a co-design approach to
improve the healthcare journey
Implementation of Early Detection and Early
Intervention for Babies at risk of Cerebral Palsy at Perth
Children’s Hospital in Western Australia: a service
evaluation
Humble Beginnings: The quest for an equitable,
evidence-based, state-wide pathway for
‘at risk’ Tasmanian neonates
Aboriginal and Torres Strait Islander Infants at risk of
Adverse Neurodevelopmental Outcomes: a prospective
cohort study
Break

Child & Adolescent CP Clinical Trials – Chair: A/Prof. Leanne Sakzewski
2245-2300
Thu 4 Mar
2300-2315
Thu 4 Mar
2315-2330
Thu 4 Mar
2330-0045

0445-0500

0545-0600

1445-1500

1345-1400

Dr Sarah Reedman

0500-0515

0600-0615

1500-1515

1400-1415

A/Prof. Leanne
Sakzewski

0530-0530

0615-0630

1515-1530

1415-1430

Dr Dayna Pool

0530-0545

0630-0645

1530-1545

1430-1445

An Update on the Participate CP RCT of Participationfocused Physical Activity Intervention in Children with CP
Hand Arm Bimanual Intensive Training Including Lower
Extremity: HABIT-ILE Australia Update
Locomotor Training in Children with Cerebral Palsy,
GMFCS levels IV and V
Break

International Hot Topics in Cerebral Palsy Research 2021 Program

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PROGRAM
FRIDAY 5 MARCH 2021
Neuroimaging in Neonates & CP – Chair: Dr Jurgen Fripp
2345-0000
Thurs 4
Mar
0000-0015
Fri 5 Mar

0545-0600

0645-0700

1545-1600

1445-1500

Dr Kerstin Pannek

0600-0615

0700-0715

1600-1615

1500-1515

Dr Alex Pagnozzi

0015-0030

0615-0630

0715-0730

1615-1630

1515-1530

Prof. Sampsa
Vanhatalo

0030-0045

0630-0645

0730-0745

1630-1645

1530-1545

Brain MRI of Preterm Newborns
Using Cloud-based Tools to Deliver Advanced MRI
Analyses to the Clinic
Wearable Technology for Early Neurological Diagnosis:
challenges and promises
Break

Infant & Preschool CP Clinical Trials – Chair: Prof. Roslyn Boyd
0045-0100

0645-0700

0745-0800

1645-1700

1545-1600

0100-0130

0700-0730

0800-0830

1700-1730

1600-1630

0130-0200

0730-0800

0830-0900

1730-1800

1630-1700

Dr Sarah Reedman
Prof. Yannick
Bleyenheuft
A/Prof. Andrea
Guzzetta

0200-0230

0800-0830

0900-0930

1800-1830

1700-1730

A/Prof. Andrea
Guzzetta
Olena Chorna

0230-0245

0830-0845

0930-0945

1830-1845

1730-1745

Dr Kath Benfer

0245-0255

0845-0855

0945-0955

1845-1855

1745-1755

Prof. Ros Boyd

Active Start Active Future: swapping sedentary time for
active time in pre-school children with CP using the
science of behaviour change
Recent Advances for Early HABIT-ILE in Children with
Cerebral Palsy
Update on the VISIBLE study for Seeing Impaired Infants
BornTogether: Implementation of Early Detection and
Early Intervention Service Delivery in Infants at Risk for
Cerebral Palsy to Promote Infants’ Psychomotor
Development and Maternal Health
Update on the LEAP-CP Programs - RCT of Peer
delivered early intervention for children with CP: Indian
and
Aboriginal & Torres Strait Islander Trials
Closing Remarks

International Hot Topics in Cerebral Palsy Research 2021 Program

5

WELCOME
& OPENING
AUSTRALASIAN CEREBRAL PALSY CLINICAL TRIALS
NETWORK (AUSCP-CTN): 4 YEAR REPORT CARD
The Australasian Cerebral Palsy Clinical Trials
Network (AusCP-CTN, NHMRC Centre for
Research Excellence) is a multi-national team of
experts in paediatric neurology, neonatology,
epidemiology, rehabilitation and knowledge
translation – coming together with one vision –
reduction of CP and improved outcomes in
children. Since establishment of the network in
2017, the team has been working tirelessly
towards our vision, through developing and
implementing three international clinical
practice guidelines across clinical settings (early
diagnosis, early intervention, and functional
therapy); upskilling 1,000+ clinicians on gold
standard tools for detection of infants at risk of
CP; testing efficacy of novel interventions (13
national multisite trials) for children with cerebral
palsy and their families, and working with 50+
consumers and families to develop inclusive
user-friendly apps for the community. The
Australasian CP Clinical Trials Network has
progressed on our work-plan to uplift earlier
detection of CP, fast tracked children to
multisite randomised clinical trials of new
neuroprotectants, and to develop and test new

rehabilitation. Outputs from the Network have
contributed towards the Australian Cerebral
Palsy Register, which the latest report showed
the rate of CP has fallen from 1 in 400, to 1 in 700
live births, due multifactorial and concerted
team effort across Australia of families, clinicians
and researchers in the areas of public health,
obstetrics and midwifery, neonatology,
paediatrics and of course epidemiology.
Through generous funding support from the
NHMRC-EU Horizon 2020 grant, the AusCP-CTN is
also the Australian arm of the international
BORNTOGETTHERE Consortium (led by AI A/Prof.
Andrea Guzzetta, The University of Pisa). Going
forward, the AusCP-CTN will partner with
Consortium members to exploit current
evidence on early detection, characterisation
and intervention for infants at high risk of 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 (Queensland
and remote Australia).

Prof. Roslyn Boyd
Chief Investigator and Director of the AusCP-CTN CRE
Scientific Director of the Queensland Cerebral Palsy Rehabilitation &
Research Centre, Faculty of Medicine, The University of Queensland
Professor Boyd leads an internationally recognised team of researchers conducting clinical
trials of novel interventions geared to optimising neuroplasticity, early detection of cerebral
palsy, longitudinal comprehensive outcomes linked to brain structure and function. Her
team has conducted 17 RCTs in CP and infants born preterm. She has received >$40M in
grants including 13 NHMRC, 1ARC, 1 NIH and has published >305 publications. She has had
continuous NHMRC people support, being a Research Fellow (2016-2021) and previous
QLD Smart State Fellow. She and her research team have been awarded the most
prestigious international prize for CP Research, the Gayle Arnold Award, in 2010, 2011 and
2014. Recently she received the Mentorship Award from The American Academy for
Cerebral Palsy and Developmental Medicine and the Faculty of Medicine at The University
of Queensland.

International Hot Topics in Cerebral Palsy Research 2021 Program

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KEYNOTE
SESSION
UPDATE FROM THE NORWEGIAN QUALITY AND
SURVEILLANCE REGISTRY FOR CEREBRAL PALSY
(NORCP)
The aim of the Norwegian Quality and
Surveillance Registry for Cerebral Palsy (NorCP) is
to promote knowledge-based and equal
treatment for people with cerebral palsy. NorCP
is the result of many years of close cooperation
between the Cerebral Palsy Registry of Norway
and the Cerebral Palsy Follow-up Program,
which in 2020 was merged into one registry.
Participation in NorCP means that children with
cerebral palsy from the time of early diagnosis
and up to age 18 years are systematically

assessed by a multi-disciplinary team of
professionals according to standardized
protocols, and that data from the assessments
are registered in the national registry. Our main
aims are to monitor prevalence of CP,
specifically causes and risk factors, and to
ensure that every child receives “the right
treatment at the right time” using evidencebased measures.
We will report on the latest NorCP research and
quality improvement projects.

A/Prof. Guro L. Andersen
Pediatrics Specialist, Habilitation Center, Vestfold Hospital Trust,
Tønsberg, Norway
Dr. Guro L. Andersen, MD is an authorized Pediatrics Specialist working as a
neuropediatrician at the Habilitation Center, Vestfold Hospital Trust, Tønsberg,
Norway. She is one of the founders and current Leader of the Norwegian Quality and
Surveillance Registry for Cerebral Palsy (NorCP) (formerly: Cerebral Palsy Registry of
Norway).
She holds a part time position as Associate Professor at the Department of Clinical
and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian
University of Science and Technology in Trondheim, Norway.
Her PhD is in Public Health and her research experience is mainly in the field of
cerebral palsy (risk factors, motor function and associated impairments). She is
Principal Investigator/Project Leader for many national and international research
projects including: CP-NORTH: Living Life with Cerebral Palsy in the Nordic Countries,
The WE Study: Does botulinum toxin A make walking easier in children with cerebral
palsy, and the CPPain programme.

Dr Sandra Julsen Hollung
Health Informatics Specialist and Researcher, Vestfold Hospital Trust, Tønsberg,
Norway and Oslo University Hospital, Oslo, Norway.
Dr Sandra Julsen Hollung is a Health Informatics Specialist and Researcher for the Norwegian
Quality and Surveillance Registry for Cerebral Palsy (NorCP) at the Vestfold Hospital Trust, Tønsberg,
Norway and Oslo University Hospital, Oslo, Norway.
Her PhD is in Medicine and Health Sciences and her research experience is in the field of cerebral
palsy (prevalence and comorbidities). She is a research team member in many national and
international research projects including: CP-NORTH: Living Life with Cerebral Palsy in the Nordic
Countries, CPPain programme and Global trends and prevalence of cerebral palsy: a systematic
analysis study. Her expertise is also in the validation/quality of registry data and linking national
registries.
Since 2012, she has been an Elected Member of the European Union Joint Research
Centre/Surveillance of Cerebral Palsy in Europe Management Committee. She has been a
member of the American Academy for Cerebral Palsy & Developmental Medicine International
Committee since 2020.
International Hot Topics in Cerebral Palsy Research 2021 Program

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KEYNOTE
SESSION
UPDATE FROM THE AUSTRALIAN CP REGISTER (ACPR)
The Australian CP Register (ACPR) exists as a
result of a collaboration between state/territory
cerebral palsy (CP) registers across Australia and
includes records for >9000 children with CP. The
CP registers are important resources for both
epidemiological and clinical research.
Historically, one challenge in epidemiological CP
research has been the limited number of cases
available after stratification when studying small
subgroups of CP. In this presentation, we will
illustrate the utility of a collaboration between
the ACPR and the Surveillance of Cerebral Palsy

in Europe. This collaboration has provided
sufficient numbers of records to conduct
research aimed at better understanding the
clinical profile and specific aetiological risk
factors in small but important CP subgroups (eg.
higher order multiples and post-neonatally
acquired CP). In the second half of this
presentation, we will provide an overview of
current research and quality assurance activities
being conducted by state/territory CP registers
from across Australia.

Dr Shona Goldsmith
Research Fellow, Cerebral Palsy Alliance Research Institute,
The University of Sydney
Shona is a Research Fellow in Epidemiology at the Cerebral Palsy Alliance
Research Institute, The University of Sydney. Shona runs the ACT CP Register
and is a Policy Group member of the Australian Cerebral Palsy Register. Her
research focuses on aetiology and prevention, with recent studies on
congenital anomalies, assisted reproductive and multiple births. Shona is
motivated by the power of national and international collaborations to build
epidemiological research capacity.

Dr Sarah McIntyre
Senior Research Fellow, Cerebral Palsy Alliance Research Institute,
The University of Sydney
Sarah is a Senior Research Fellow at Cerebral Palsy Alliance Research Institute, The
University of Sydney. She is responsible for running the NSW CP Register and is the current
Chair of the Australian Cerebral Palsy Register Group. She is a perinatal and paediatric
epidemiologist and her work focuses on the aetiology and prevention of cerebral palsy
and other developmental disabilities. Sarah strongly believes in community involvement
in research and she is the research lead for CP Quest – community and researchers
together.

International Hot Topics in Cerebral Palsy Research 2021 Program

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KEYNOTE
SESSION
PREVENTION OF CP: WHAT ELSE CAN WE DO?
Two years ago, the Australian Cerebral Palsy
Register Report showed a remarkable 30% drop
in the rate of cerebral palsy with Australia now
having one of the lowest recorded rates in the
world. This decrease was sustained in the latest
report in 2020. Falls of a lesser magnitude are
also being reported in other regions including
Europe. These promising results are encouraging
health professionals, families, researchers and
others to search for other ways to protect the
brain of the developing fetus, the high risk
newborn in intensive care and those infants
thought to at high risk of cerebral palsy.
Around 50% of people who are diagnosed with
CP spent time in a newborn intensive care unit or
special care unit suggesting this may be an
optimal time to study and institute preventative
strategies. Already there is considerable energy
being expended to decrease the potentially
neurotoxic effects of newborn intensive care
through skin to skin care, support of breastfeeding and neurodevelopmental care.
Prematurity remains a major risk factor for
cerebral palsy. Promising strategies are emerging
including the Western Australian Preterm Birth

Prevention and the “Birthing on Country”
initiatives. We are also witnessing a decrease in
intracranial haemorrhage in preterm infants in
Australia and New Zealand. New evidence has
also been published around the role of therapies
such as caffeine, erythropoietin and delayed
cord clamping as well as confirming the
protective effect of antenatal magnesium
sulphate.
For term babies there is acceleration of
breakthroughs in the areas of genomics,
cytomegalovirus infection prevention, antenatal
diagnosis of birth defects and the search for
adjuvant therapies to therapeutic hypothermia.
There is increasing interest in the role of
engineering, technology and artificial
intelligence to predict and prevent adverse
events. Further improvements will require data
sharing facilitating accelerated large
multicentre trials with multidisciplinary teams.
Research in the area of cerebral palsy
prevention and mitigation has become a vibrant
and rapidly progressing area of clinical and
academic endeavour that is creating real and
meaningful progress.

Prof. Nadia Badawi AM
Macquarie Group Foundation Professor; Chair of Cerebral Palsy,
Cerebral Palsy Alliance Research Institute
Professor Nadia Badawi AM is the Macquarie Group Foundation Professor and Chair
of Cerebral Palsy at the Cerebral Palsy Alliance Research Institute, The University of
Sydney. She is the Medical Director and co-Head of the Grace Centre for Newborn
Care and a member of the NICUS Managers Group. She is a member of the
Australian CP Register; and has been a Co-Chair of 8 International Cerebral Palsy
Prevention and Cure Summits. She has been a leader in changing developmental
follow-up procedures for all children who have surgery and was involved in the
establishment of an Australian and NZ Neonatal surgery network. Nadia was a
member of the committee for the Australian Cerebral Palsy Strategy Development.
She was awarded an AM in the Queen’s Birthday Honours List: for significant service
to paediatrics, neo-natal intensive care and research into cerebral palsy in 2014 and
was selected as one of the 100 Australian Women of Influence (Australian Financial
Review & Westpac): global category for leadership in the search for prevention and
cure of cerebral palsy, and providing educational opportunities for children in
developing countries.

International Hot Topics in Cerebral Palsy Research 2021 Program

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KEYNOTE
SESSION
OFFICIAL LAUNCH: JOOAY IN AUSTRALIA CONNECTING CHILDREN AND YOUTH WITH DISABILITIES
TO LEISURE
Background: Children with disabilities experience
restrictions participating in the community.
Increased participation in leisure and recreation
enables social connectedness and physical
activity, enhancing health and quality of life. The
challenge is finding the appropriate community
leisure opportunities which are accessible and
inclusive for individuals with disabilities and
health conditions. There is currently no
centralized resource to help families find such
leisure opportunities in their local communities. A
Canadian application ‘Jooay’
(https://jooay.com/) provides a platform which
could address this need.
Jooay in Australia: Jooay is a free app that helps
families locate leisure opportunities that are
accessible, suit their needs and abilities, match
their preferences, and enhance their ability to
participate in their local communities. While the
current focus of the app is Canadian activities,
we are partnering with colleagues in Western
Australia and New South Wales to build a
community of inventory of community
leisure/recreation activities.
What are community leisure activities?
Community leisure activities include organised
sports, camps, arts or miscellaneous activities
(scouts, clubs and societies etc.) that are
genuinely recreational in nature. Community

leisure does not include respite care or activities
in which the primary aim is therapeutic.
How does it work? Jooay can be downloaded
and installed on phones running iOS 10.3 or later,
or Android 4.4 and up. It is a GPS-based
repository of information about leisure and
recreation opportunities. Users can see activities
on a map or in a list (with the distance to their
current location). Users can also search for
activities and apply filters to return results that
are likely to meet their needs.
We have been able to complete this project
with thanks to Prof Catherine Elliott and the team
at Curtin University and Dr Keiko Shikako-Thomas
and Dr Annette Majnemer and the Canadian
Jooay Team. More info on: https://creauscpctn.centre.uq.edu.au/article/2021/18/JOO
AY

Natasha Garrity
Research Assistant (Jooay), Cerebral Palsy Alliance Research Institute
Natasha graduated from high-school in 2018, volunteered as a research assistant at the Cerebral Palsy Alliance Research
Institute and is now enrolled at Macquarie University. She is also an ambassador for the Cerebral Palsy Research Foundation
and an active member of CP Quest, and a member of the NSW/ACT CP Register Advisory board. Natasha is interested in
becoming a health researcher with a focus on cerebral palsy prevention and treatment.
Natasha is currently working as a casual research assistant to develop the content and implement the ACT/NSW arm of the
JOOAY App in Australia. This application aims to promote community-based recreation activities for children and adults
living with a disability to improve their health and wellbeing.

International Hot Topics in Cerebral Palsy Research 2021 Program

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KEYNOTE
SESSION
UPDATES ON
GENOMICS OF CP
The International Cerebral Palsy Genomics
Consortium (ICPGC) is a global consortium that
was establish in 2017, with the major goal of
creating an open forum for collaboration
among clinicians and researchers dedicated to
unravelling the genomic basis of cerebral palsy.
In support of this effort, the ICPGC is developing
the CP Commons, a unified data repository that
enables data sharing. This talk will give you a
brief update on the consortium, our current
projects and what we are aiming to achieve.

A/Prof. Michael Fahey
Department of Paediatrics, Monash University; Head of Child
Neurology, Director of Neurogenetics, Monash Children’s Hospital
Associate Professor Michael Fahey is a Chief Investigator on the Aus-CP-CTN CRE and
member in two themes – the Pre-clinical and Neuroprotection theme and the Early
Detection and Neuroimaging Theme. Michael’s research focuses on using
neurogenetics to understand the pathways that lead to Cerebral Palsy. Michael
collaborates on research into treatments for Cerebral Palsy with researchers at the
Ritchie Centre, part of the Monash Institute of Medical Research. Among the work is
research into melatonin, a hormone produced in the brain, with good efficacy in
preclinical trials. Excitingly, this work is now moving to human trials.
Michael maintains a workload as a physician in Paediatric Neurology and in
Neurogenetics clinics as well as neurologist at the Paediatric Rehabilitation Clinic.
Associate Professor Michael Fahey has also been awarded a Fulbright Scholarship in
2019-2020 which will allow him to draw together two distinct research arms into
genomics and brain imaging primarily located in Australia and the United States.

International Hot Topics in Cerebral Palsy Research 2021 Program

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KEYNOTE
SESSION
ICPGC UPDATES: THE CP COMMONS AND COMMON
DATA ELEMENTS
The International Cerebral Palsy Genomics
Consortium (ICPGC) was formed as a
collaborative international network of clinicians,
researchers, and advocates to maximise their
collective impact on evaluating the genomic
contribution to cerebral palsy (CP). To achieve
this goal, we have created the CP Commons,
an online resource that aggregates genomic
and clinical data collected from people with
CP. This presentation will demonstrate the CP
Commons and give an update on the Common
Data Elements for clinical data in CP genomics
studies.

Yana Wilson
Research officer, CP Genomics, Cerebral Palsy Alliance Research
Institute, The University of Sydney
Yana Wilson is a Research Officer at the Cerebral Palsy Alliance Research Institute. Her
main research interests are investigating genetic variation that contribute to cerebral
palsy and other neurodevelopmental disorders, and the harmonisation, standardisation
and management of big data assets. Yana is a founding member and Governance
Council member of the International Cerebral Palsy Genomics Consortium (ICPGC), and
leads the development of the CP Commons, a data platform that will allow researchers
and clinicians to share de-identified data to accelerate cerebral palsy genomics.

International Hot Topics in Cerebral Palsy Research 2021 Program

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KEYNOTE
SESSION
STEM CELLS FOR CEREBRAL PALSY:
CURRENT STATE OF THE SCIENCE
Stem cells are a new frontier in medicine. Many
parents of children with cerebral palsy feel
compelled to buy cell therapies overseas, given
the lack of available treatments in Australia.
COVID-19 has interrupted many family’s stem
cell tourism travel plans. This talk will provide an
overview of the latest safety and efficacy
research of stem cell therapies for cerebral
palsy, including numbers treated and clinical trial
results. We will also examine the changing
attitudes to stem cell therapies. The talk will
conclude by critically evaluating next steps for
the field, the barriers and facilitators to
accelerating the research pipeline.

Prof. Iona Novak
Head of Research, Cerebral Palsy Alliance Research Institute, The University of
Sydney
Professor Iona Novak is Head of Research at Cerebral Palsy Alliance Research
Institute, Sydney.
Professor Novak oversees the research activities of Institute and supports the
Australian Cerebral Palsy Register. Professor Novak is a Fulbright Scholar and her background is in
occupational therapy with research interests in evidence-based practice; home programs; and
neuroprotection.

International Hot Topics in Cerebral Palsy Research 2021 Program

13

KEYNOTE
SESSION
NEUROPROTECTION FOR THE HIGH-RISK NEWBORN
INFANT
In this presentation Professor Hunt will review
current and future therapies for which trials are
being developed to protect the newborn brain.
High-risk newborns, whether born prematurely or
at term, are vulnerable to cerebral injury, with
white matter injury being most prevalent.
Therapies targeting protection of the immature
white matter, if beneficial, should bring further
reductions to the rate of cerebral palsy.

Prof. Rod Hunt
Professor of Neonatal Medicine, Monash University; Co-Director of
Neonatal Research at Murdoch Children’s Research Institute; Director of
Research in Victoria, Cerebral Palsy Alliance
Rod Hunt is the Professor of Neonatal Medicine at Monash University, Co-director of Neonatal
Research at MCRI, and Director of Research in Victoria for the Cerebral Palsy Alliance. His
research has included MR imaging of the newborn brain, as well as utilisation of
neuromonitoring tools such as aEEG and NIRS. He has had a strong focus on
neurodevelopmental outcomes for high-risk newborns, and he is interested in
neuroprotection for the preterm and term born infant.

International Hot Topics in Cerebral Palsy Research 2021 Program

14

EARLY DETECTION &
NEONATAL CLINICAL TRIALS
IMPLEMENTATION OF EARLY DETECTION OF CP
IN THE USA
The Cerebral Palsy Foundation (CPF) is a
charitable organisation, based in New York City,
USA. The CPF defines and leads research,
innovation and collaboration that changes lives
for people with cerebral palsy. CPF’s
collaborative Networks bring together many of
the world’s most prestigious medical institutions,
as well as innovative thinkers and key opinion
leaders in diverse areas such as technology and
media, in order to accelerate not only the
development of critical advances, but also their
delivery.
While CPF’s work includes important strides being
made towards the eventual prevention of
cerebral palsy and developmental disabilities,
CPF’s focus is on the translational research,
clinical application and knowledge transfer that
can dramatically change lives today.

Rachel Byrne
Executive Director, Cerebral Palsy Foundation, USA
Rachel Byrne is the Executive Director at the Cerebral Palsy Foundation. She has been
working in the field of pediatric rehabilitation and cerebral palsy research for the past 14
years. Rachel has a background in physical therapy, with a particular interest in
neuroplasticity and motor learning. Her early career as a clinician delivering physical therapy
services in schools, hospitals and private practice is underpinned by her research interests
focused on knowledge translation and the impact on a person’s ability to participate in the
community across the lifespan.
At the Foundation, she has continued her research interest in evidence-based practice,
knowledge translation, early detection and interventions across the lifespan and population
studies for cerebral palsy. Rachel was instrumental in developing the Just Say Hi inclusion
curriculum which is now being taught nationally. In the last 12 years she has given multiple
presentations at international conferences and managed large multisite research projects.

International Hot Topics in Cerebral Palsy Research 2021 Program

15

EARLY DETECTION &
NEONATAL CLINICAL TRIALS
THE CEREBRAL PALSY DIAGNOSIS EXPERIENCE AND ENSUING
CLINICAL PATHWAYS: USING A CO-DESIGN APPROACH TO
IMPROVE THE HEALTHCARE JOURNEY
The receipt of the diagnosis of cerebral palsy
(CP) presents a family with one of the first
significant moments in the management of the
condition and is believed to play a central part
in shaping the parental role for years to come.
The diagnosis experience, early care pathway
and the patient/family journey can be a
complex and varied process, but with growing
access to and awareness of evidence-based
assessment tools and early management, there
continues to exist opportunities for improvement
in health service delivery. Co-design is a
participatory approach to prioritising solutions
and strategies for change in healthcare that
recognises value in collaboration between
patients, support people, and healthcare staff.
Our aim was to co-create prioritised solutions
and strategies for change, with a goal to support
improvements in early health service delivery
around early diagnosis and management in CP.
Two Co-design workshops, facilitated by an
external Health Design team were held in
Auckland, New Zealand. The ‘Discovery’
workshop focused on around sharing
experiences, opinions, and ideas on the topic,
whilst the second workshop ‘Prototyping’
centred on ideas around ‘solutions’. Six mothers
(of children ranging GMFCS I-IV, diagnosis

between 12-24mo of age) and 9 clinicians
(Paediatric Neurologist, Paediatrician,
Developmental Paediatrician (n=2), Paediatric
physiotherapist, Developmental Occupational
Therapist, Neuropsychologist, Doctor)
participated in the co-design process. Three of
the 9 clinicians attending both workshops, and
all but one mother attended both workshops.
Two more workshops are planned for Māori
families and clinicians, which will be co-led by a
Māori Health Service worker and will follow
culturally appropriate practices.
The Discovery workshop revealed powerful
stories about early experiences (what works well,
what does not), the needs within clinician-family
communication, and the needs within service
provision. The Prototyping workshop revealed
that it was felt that digital information on CP can
be overwhelming, often country-specific, and
not always trustworthy, and recommendations
were co-created around what should be
prioritised within a resource. The development of
an educational resources targeted for families,
but packaged also as guidance for clinicians, is
currently underway by the Design for Health
team, with further input planned from Maori
families and clinicians planned.

Dr Sian Williams
Research Fellow, Curtin University and The University of Auckland, NZ
Dr Sîan Williams is a Senior Lecturer at the School of Allied Health, Curtin University, and post-doctoral fellow with
the Australasian Cerebral Palsy Clinical Trials Network, based in Auckland New Zealand.
The key focus of Sîan’s work in New Zealand has centred on the early detection of cerebral palsy (CP),
supporting the training and implementation of key diagnostic tools for earlier detection, and the generation of
new knowledge around current practice- with a large emphasis on involving the family perspective and
identifying potential inequities in service access. Further to this, Sîan is also working to understand impaired
muscle growth in infants born prematurely and at risk of neurological injury, seeking to understand the
relationship between delayed/impaired musculoskeletal growth, motor development, and neurological injury.

International Hot Topics in Cerebral Palsy Research 2021 Program

16

EARLY DETECTION &
NEONATAL CLINICAL TRIALS
IMPLEMENTATION OF EARLY DETECTION AND EARLY
INTERVENTION FOR BABIES AT RISK OF CEREBRAL PALSY
AT PERTH CHILDREN’S HOSPITAL IN WESTERN AUSTRALIA:
A SERVICE EVALUATION
Background: The Kids Rehab WA Early
Intervention Service (EIC) is a tertiary program
that provides specialist, multidisciplinary
assessment, diagnosis and intervention for
babies and children up to 4 yo with complex
neurodevelopmental needs.
Between July 2015 and December 2019 EIC
expanded to implement the published
recommendations for early detection and early
intervention for babies at risk of cerebral palsy.
This expansion was done in three phases;
1. a pilot to introduce early detection
protocols and training
2. an expansion phase to increase clinical
services and research
3. an evaluation phase
The implementation has been fully supported by
the active Kids Rehab Consumer Group, which
confirmed that early intervention is a priority and
has guided implementation and evaluation. The
EIC research integrated into the EIC clinical
service was supported by the NHMRC funded
Australian Cerebral Palsy Clinical Trials Network
(AusCP-CTN). In alignment with evidence-based
family-centred practice in early intervention, the
tertiary PCH service works closely with health and
disability service providers who deliver
community and home-based support for babies
and families.
Objectives: To describe the implementation of
the recommendations for early detection and
early intervention for babies at risk of cerebral
palsy in the Kids Rehab WA EIC at PCH and the
outcomes.

Design: The Knowledge to Action Framework1
was used to guide implementation of the
recommendations for early detection and early
intervention for babies at risk of cerebral palsy.
An observational quantitative cohort study
design with prospective and retrospective data
collection was used to measure change
following the implementation and to identify
factors that determined service access.
Methods: Implementation measures included
number of babies and age of referral, number
of assessments (GMAs, HINE and MRI) delivered
at time points aligned with the early detection
algorithm2, number of clinicians trained in early
detection assessments, clinical resources and
activity used for service provision, number of
children enrolled in clinical research trials, data
collection compliance and quality and parent
satisfaction.
All babies referred to EIC between 1/7/2015 and
31/12/2019 were included and allocated to a
cohort aligned with the three implementation
phases. Change in outcome variables (age of
cerebral palsy diagnosis and number of children
diagnosed with cerebral palsy) between the
three phases were compared to the preimplementation cohort referred for diagnosis of
cerebral palsy between 1/7/2014 and 30/6/2015.
Descriptive statistics; mean, median, standard
deviations and proportions, were reported for all
continuous variables, and frequencies and
percentages for categorical variables.  
Sociodemographic variables (Australian Bureau
of Statistics SEIFA scores and Adverse Childhood
Experience scores) were used as covariates to
assess for significant association with other
variables in a logistic regression model.
This study has ethical approval from the West
Australian (WA) Child and Adolescent Health
International Hot Topics in Cerebral Palsy Research 2021 Program

17

EARLY DETECTION &
NEONATAL CLINICAL TRIALS
Service (RGS0000004288) and reciprocal
approval from Curtin University, WA.
Results: Data for 640 babies and children was
analysed for the period 1/7/2014 to 31/12/2019;
Results will be presented.
Conclusions: The recommendations for early
detection and early intervention for children at
risk of cerebral palsy have been successfully
implemented at PCH in the Kids Rehab WA EIC
and improved outcomes for  babies referred to
the service. This preparation for implementation
of a state-wide network aims to improve
outcomes for all babies in Western Australia at
risk of CP and their families by improving access
to gold standard, evidence based
early detection and early intervention.
Furthermore, planned research will build on this
to provide a framework for development of
clinical networks for other neurodevelopmental
disabilities.

Prof. Jane Valentine
Paediatrician, Perth Children’s
Hospital
Prof. Jane Valentine is a Paediatrician in the
Kids Rehab Department at the Perth Children’s
Hospital WA and Head of Research for Kids
Rehab WA. Prof. Valentine is also a Clinical
Professor at The University of Western Australia,
Medical School.

International Hot Topics in Cerebral Palsy Research 2021 Program

18

EARLY DETECTION &
NEONATAL CLINICAL TRIALS
HUMBLE BEGINNINGS: THE QUEST FOR AN EQUITABLE,
EVIDENCE-BASED, STATE-WIDE PATHWAY FOR ‘AT RISK’
TASMANIAN NEONATES
The SPARK Project is an 18-month project
currently operational in Tasmania. SPARK is an
acronym for State-wide Pathway for At Risk Kids,
but moreover refers to the SPARK of
neuroplasticity that early intervention can elicit in
the developing brain*. The SPARK Project’s
primary aim is to develop a state-wide clinical
pathway for ‘at risk’ Tasmanian infants
incorporating international guidelines for early
detection of cerebral palsy (CP).
Whilst many individual Tasmanian clinicians were
aware of the benefits of early detection and the
existence of the international guidelines (Novak
et al, 2017), there was previously no state-wide
approach regarding implementation of these
principles. A handful of GM-trained clinicians
were raising awareness in their individual work
areas, but a coordinated, state-wide approach
was lacking. Clinicians working in ‘at risk’ infant
follow-up clinics across the three Tasmanian
regions were eager for a coordinated approach
and welcomed the SPARK Project to support
their hard work in this area.
Our Project followed a co-design approach,
incorporating consumers on our state-wide
steering committee and undertaking in-depth
interviews with a selection of families. We also
learnt an enormous amount from clinicians at
leading hospitals on the mainland who were
extremely generous with their time. After the

initial research and scoping phase, the Project
began to work through its main priorities:
Developing a state-wide clinical guideline
outlining eligibility, assessments, and specific
review ages for children in follow-up clinics
across Tasmania
Developing resources for families
Delivering training to clinicians working in ‘at risk’
infant follow-up clinics.
Clinical redesign efforts to support
implementation including development of new
forms, guidelines, advocacy with eHealth
regarding GM IT infrastructure, funding of
equipment, re-naming clinics, etc.
Tasmania is a small island with a population of
around 500,000 people. We are in the unique
position of having just one health service. The
SPARK Project was strengthened by the
formation of state-wide steering committee and
working groups, in which passionate clinicians
worked together to create a pathway for
Tasmania’s ‘at risk’ infants over time. From
humble beginnings, we now have a state-wide
vision to guide our work in this area and
hopefully spark many neurons for years to come.
*funding was provided by the Australian
Government through the National Partnership
Agreement on Improving Health Services in
Tasmania.

Dr Eliza Maloney
State-wide Paediatric Rehabilitation
Consultant, FRACP, AFRM
Dr Eliza Maloney is a state-wide Paediatric
Rehabilitation Consultant and a General
Paediatrician based in Hobart, Tasmania. She holds
a Senior Lecturer Position at University of Tasmania.

Clare Wiltshire
Physiotherapist and SPARK Project Officer
Clare is a physiotherapist and project officer working alongside Dr Eliza
Maloney on the SPARK (State-wide Pathway for At Risk Kids) Project. Alongside
a clinical interest in neurology, Clare is studying a Grad. Cert. in Clinical
Redesign and is passionate about ensuring that health systems deliver
equitable, evidence-based care with the client at the heart of the picture.
International Hot Topics in Cerebral Palsy Research 2021 Program

19

EARLY DETECTION &
NEONATAL CLINICAL TRIALS
ABORIGINAL AND TORRES STRAIT ISLANDER INFANTS AT
RISK OF ADVERSE NEURODEVELOPMENTAL OUTCOMES:
A PROSPECTIVE COHORT STUDY
Many Australian First Nations infants experience
a range of birth, post neonatal, socioeconomic
and environmental factors in the first 12 months
of life, increasing their risk of developmental
vulnerability. This prospective cohort study will
investigate the early identification of adverse
neurodevelopmental outcomes (NDO) in
Aboriginal and Torres Strait Islander infants living
in Queensland (birth years 2020-2022).
Accuracy and feasibility of early screening tools
for identifying infants ‘at risk’ of a later diagnosis
of specific neurodevelopmental disorder (NDD)
(i) Cerebral Palsy (CP), (ii) Autism Spectrum
Disorder (ASD) (iii) Fetal Alcohol Spectrum
Disorder (FASD) and/or adverse NDO (significant
delay) will be determined at 12 months
corrected age (CA).

The LEAP-CP early detection study will examine
the relationship between risk factors, screening
results and developmental and diagnostic
outcomes at 12 months CA, to enable culturally
appropriate prediction of infants ‘at risk’ of
adverse NDOs.

Carly Luke
Senior Physiotherapist, Queensland Paediatric Rehabilitation
Service, Queensland Children’s Hospital; PhD candidate, The
University of Queensland
Ms Carly Luke (MAPaedPhysPrac, BPT) is a Senior Physiotherapist with the
Queensland Paediatric Rehabilitation Service at the Queensland Children’s
Hospital in Brisbane and a PhD candidate with The University of Queensland.
Throughout her career she has worked extensively across tertiary, acute and
community paediatrics, specialising in complex rehabilitation, developmental
and neurological caseloads. Carly has a completed her Masters of Advanced
Paediatric Physiotherapy and has worked as a research physiotherapist with the
Queensland Cerebral Palsy and Rehabilitation Research Centre, screening and
providing early intervention to infants at 'high risk' of cerebral palsy and adverse
neurodevelopmental outcomes.

International Hot Topics in Cerebral Palsy Research 2021 Program

20

EARLY DETECTION &
NEONATAL CLINICAL TRIALS
UNDERSTANDING THE EARLY NATURAL HISTORY OF
CEREBRAL PALSY STUDY UPDATE
The diagnosis of cerebral palsy (CP) is between
12 and 24 months in high income countries, but
as late as 5 years in low and middle income
countries. A consequence of late diagnosis
historically being the norm, very little is known
about the early development of infants with CP
under two years of age. Implementation of the
2017 Early Accurate Diagnosis of CP international
clinical guidelines means infants are starting to
have a CP diagnosis as young as 3 months of
age. Subsequently parents are asking for specific
prognostic information for their babies earlier
than ever before. Understanding the Early

Natural History of CP is a prospective longitudinal
cohort study which will map a range of
developmental domains of infants with, or at
high risk of CP over the first two years.
Recruitment is ongoing in Australia, Sweden and
Italy. In this session we will provide an update on
study objectives, eligibility, local and
international recruitment. The Cerebral Palsy
Alliance/ New South Wales (NSW) Health Early
Diagnosis Clinic for CP will be presented as a
case study showcasing how the study is
operating in NSW.

Anna te Velde
PhD candidate, The University of Sydney; Research
Physiotherapist, Cerebral Palsy Alliance Research Institute
Anna te Velde is a PhD candidate at The University of Sydney and a Research Physiotherapist
with Cerebral Palsy Alliance Research Institute, Australia. Anna has over 10 years' experience
as a paediatric physiotherapist, working primarily with children and infants with cerebral palsy.
Anna works as a physiotherapist in the Cerebral Palsy Alliance Early Diagnosis Clinic, Australia’s
first multidisciplinary early diagnosis clinic for CP. Anna’s work in early diagnosis and
classification of cerebral palsy, particularly classification under two years of age. She is
working on the Early Natural History of Cerebral Palsy study, an international collaboration
racking infants with cerebral palsy and high risk of cerebral palsy over the first two years of life.
Anna is a co-investigator on a collaboration with CSF Global Bangladesh evaluating early
diagnosis and Early Natural History of Cerebral Palsy in Bangladesh. Anna’s research interests
also include evaluating implementation of the Early, Accurate Diagnosis in Cerebral Palsy
international clinical guideline.

International Hot Topics in Cerebral Palsy Research 2021 Program

21

CHILD & ADOLESCENT CP
CLINICAL TRIALS
AN UPDATE ON THE PARTICIPATE CP RCT OF
PARTICIPATION-FOCUSED PHYSICAL ACTIVITY
INTERVENTION IN CHILDREN WITH CP
Children with cerebral palsy (CP) participate less
often in physical activities compared to peers
without CP. Participate CP is a multi-modal,
participation-focused physical activity
intervention designed to address barriers to
participation. Dr Sarah Reedman will present an
update on the Participate CP intervention
including an analysis of the intervention
contents, behavioural mechanisms and progress
of the large, multi-site NHMRC-funded definitive
trial.

Dr Sarah Reedman
Postdoctoral Research Fellow, The University of Queensland;
Dr Sarah Reedman is a postdoctoral research fellow at the Queensland
Cerebral Palsy and Rehabilitation Research Centre at The University of
Queensland. Dr Reedman is a physiotherapist clinician-researcher, and focuses
on promotion of physical activity in children with cerebral palsy (CP). Dr
Reedman developed the first randomized controlled trial of a participationfocused therapy intervention, and is currently co-leading the development
and implementation of international guidelines to support decision-making for
effective physical activity interventions in children with CP.

International Hot Topics in Cerebral Palsy Research 2021 Program

22

CHILD & ADOLESCENT CP
CLINICAL TRIALS
HAND ARM BIMANUAL INTENSIVE TRAINING
INCLUDING LOWER EXTREMITY: HABIT-ILE AUSTRALIA
UPDATE
Background: HABIT-ILE is an intensive goal
directed intervention using a motor learning
approach that simultaneously addresses
coordination of the upper and lower limbs. This
presentation will provide an update on this multisite NHMRC project which commenced in 2018.
Design: Single blind randomised controlled trial
will compare HABIT-ILE to usual care for school
aged children with bilateral CP.
Study participants: Children aged 6-16 years with
bilateral CP, GMFCS II-IV.

Progress to date: A total of 92 children have
been recruited and randomised across three
sites (QLD=42; WA=21; NSW=29). 11 HABIT-ILE
camps have been completed and 2 final waitlist
camps will be conducted in July/August 2021. A
modified version of HABIT-ILE has been adapted
for preschool children aged 2 to 5 years and will
be tested in a new trial. The protocol for the
Preschool HABIT-ILE study will be discussed.

A/Prof. Leanne Sakzewski
NHMRC Career Development Fellow, The University of Queensland
Dr Sakzewski is a senior research fellow with the internationally recognised
Queensland Cerebral Palsy and Rehabilitation Research Centre at the
University of Queensland. Dr Sakzewski is leading nationally funded (NHMRC) multi-centre
clinical trials testing the efficacy of intensive models of motor training, social skills programs
and participation-focused therapy to enhance the functioning and quality of life of children
with cerebral palsy. She has received >Aus$10M in funding with 60+ publications. Dr Sakzewski
graduated as an occupational therapist (BoccThy) from The University of Queensland and
completed her PhD at the University of Queensland in 2010. She has held continuous
fellowships since completion of her PhD including training in implementation science through
a NHMRC Translating Research into
Practice Fellowship.

International Hot Topics in Cerebral Palsy Research 2021 Program

23

CHILD & ADOLESCENT CP
CLINICAL TRIALS
LOCOMOTOR TRAINING IN CHILDREN WITH CEREBRAL
PALSY, GMFCS LEVELS IV AND V
Locomotor training is an activity-based
intervention that has largely been adopted and
implemented in spinal cord injury rehabilitation. It
represented a significant paradigm shift in the
area, recognising the role of activity dependent
plasticity for both motor and health and wellbeing outcomes. In our recent study iStride,
locomotor training was adopted and
implemented in children with cerebral palsy
classified with GMFCS levels IV and V. In this
randomised controlled trial (n=40) children
attended hourly sessions, three times a week for
six weeks. The intervention was well tolerated
with perceived improvements in functional
mobility, active recreation as well as personal
care goals. This study suggests that locomotor
training can be safely implemented in children
classified with GMFCS levels IV and V. It provides

a useful starting point for developing much
needed interventions in this group of children
that aim to improve not only motor capacity but
also health and well-being outcomes.

Dr Dayna Pool
Physiotherapist; Research Fellow, Curtin University
Dr Dayna Pool is a physiotherapist and early career researcher at
Curtin University. Her clinical research interests include the
development and implementation of activity-based interventions in a
community setting, involving consumers and knowledge translation.
Dr Pool has founded two not-for-profit charitable organisations, both
of which aim to translate evidence-based interventions into clinical
practice both in Australia and abroad in developing countries.

International Hot Topics in Cerebral Palsy Research 2021 Program

24

NEUROIMAGING IN NEONATES
AND CP
BRAIN MRI OF PRETERM NEWBORNS
Infants born very preterm are at an increased risk
of adverse neurodevelopmental outcomes,
including Cerebral Palsy. Earlier identification of
at-risk infants enables earlier access to targeted
intervention. Brain MRI can provide valuable
information about brain growth, development,
and abnormalities, which are related to later
neurodevelopmental outcomes. In this talk, I will
present our recent findings using MRI of very
preterm infants to investigate associations
between brain microstructure and morphology,
and neurodevelopmental outcomes at 2 years.

Dr Kerstin Pannek
Senior Research Scientist, Australian E-Health Research Centre, CSIRO
Kerstin is a Research Scientist at the Australian E-Health Research Centre, CSIRO. She is an
internationally recognised expert in Brain MRI, specifically in Diffusion MRI and its
application in the newborn and paediatric brain to study normal and abnormal brain
development for early diagnosis and prognosis of adverse neurodevelopmental
outcomes. She has more than 10 years’ experience in brain diffusion MRI and
tractography analysis across all age groups including neonatal and paediatric
populations, as well as using in vivo piglet and lamb brain MRI and ex vivo mouse/rat
brain MRI.

International Hot Topics in Cerebral Palsy Research 2021 Program

25

NEUROIMAGING IN NEONATES
AND CP
USING CLOUD-BASED TOOLS TO DELIVER ADVANCED
MRI ANALYSES TO THE CLINIC
Neuroimaging is routinely performed for infants
born preterm, and for children with
neurodevelopmental disorders like Cerebral
Palsy (CP), in order to understand the type and
severity of brain injury. However these images
are currently only used qualitatively in clinical
assessment, missing out on a great deal of
information from the image. Our group is
developing several cloud-based tools to quantify

brain structure and microstructure, allowing
subtle differences from typically developing
cohorts to be identified, as well as the potential
estimation of clinical outcomes. In this
presentation, I will provide an outline of these
tools for the early detection of CP in neonates at
risk of CP, and for the brain structural
characterisation of children with CP.

Dr Alex Pagnozzi
Medical engineer and Advance Queensland fellow, Australian EHealth Research Centre, CSIRO
Dr Alex Pagnozzi is a medical engineer and Advance Queensland fellow at the Australian e-Health Research
Centre, a joint venture between CSIRO and the Queensland Government. During his PhD he utilised machine
learning and statistics to extract clinical useful information from medical images that could be used to predict
patient function. Now as a postdoctoral researcher, he is developing web-based tools to make these methods
available to researchers and clinicians, accelerating brain research and improving outcomes for children with
neurological injuries.

International Hot Topics in Cerebral Palsy Research 2021 Program

26

NEUROIMAGING IN NEONATES
AND CP
WEARABLE TECHNOLOGY FOR EARLY NEUROLOGICAL
DIAGNOSIS: CHALLENGES AND PROMISES
This talk will present an overview of the rationale
how to build infant wearables for neurological
diagnostics. While the sensor technology has
evolved dramatically over the past few years,
there are major challenges en route to making
them functional for the medical user case; and
moreover to making the results intuitive and
transparent for the clinicians, for the ultimate
benefit of a patient. Development of such
products is a highly multidisciplinary exercise,
recruiting medical and health care personnel
from different medical subfields, as well as
engineers with expertise in sensor hardware,
different software components, as well as
artificial intelligence.
This all used to be a primarily technical
challenge, but it has rapidly evolved to become
a challenge for clinical researchers: they are
now requested to think, and re-think, the
concepts; to define the actual and reachable
aims in an iterative dialogue between different
disciplines. The novel infant wearables are

solutions that won’t emulate existing practices
and/or clinicians. They are offering
complementary insights, such as quantitative
and objective assessment of infant motility in outof-hospital settings.

Prof. Sampsa Vanhatalo
Professor; Senior Consultant in clinical
neurophysiology, Helsinki University Hospital,
Finland
Prof Sampsa Vanhatalo has EU qualification (board
exam) as a clinical neurophysiologist, and he is the
professor and senior consultant in clinical neurophysiology
in Helsinki University Hospital. He obtained his MD and PhD
degrees in 1998 from the University of Helsinki, Finland, and
he also has clinical experience in general practice,
pediatrics, pediatric neurology, epileptology, neurology,
and emergency medicine.
Dr. Vanhatalo is leading the BABA center in Helsinki
Children’s Hospital, dedicated to studies on baby brain
activity (www.babacenter.fi). For the past fifteen years,
he has focused on developing methodology for neonatal
neurophysiology ranging from the development of EEG
hardware to other devices (eg. EEG caps and
stimulators), mathematical signal analyses, as well as
neurobiological models underlying early EEG activity.
Most recently, Vanhatalo’s group has initiated projects to
develop medical wearables for the mobile assessment of
infant sleep and mobility. All these activities have a heavy
translational emphasis whereby the targets of research
have been set to result in medical applications, and
hence ultimately benefit clinical work and ill babies.

International Hot Topics in Cerebral Palsy Research 2021 Program

27

INFANT-PRESCHOOL CP
CLINICAL TRIALS
ACTIVE START ACTIVE FUTURE: SWAPPING SEDENTARY
TIME FOR ACTIVE TIME IN PRE-SCHOOL CHILDREN WITH
CP USING THE SCIENCE OF BEHAVIOUR CHANGE
By 5 years of age, some children with cerebral
palsy (CP) are already spending up to 90% of
their day in sedentary postures. Sedentary time
also peaks around this age in ambulant children
with CP, but current interventions are designed
for children over the age of 8. Active Start Active
Future is a new intervention grounded in the
science of behaviour change that works with
adult family and caregivers around the child to
help swap sedentary for active time in children
with CP, including children with severe CP and
intellectual disability.

Dr Sarah Reedman
Postdoctoral Research Fellow, The University of Queensland
Dr Sarah Reedman is a postdoctoral research fellow at the Queensland
Cerebral Palsy and Rehabilitation Research Centre at The University of
Queensland. Dr Reedman is a physiotherapist clinician-researcher, and focuses
on promotion of physical activity in children with cerebral palsy (CP). Dr
Reedman developed the first randomized controlled trial of a participationfocused therapy intervention, and is currently co-leading the development
and implementation of international guidelines to support decision-making for
effective physical activity interventions in children with CP.

International Hot Topics in Cerebral Palsy Research 2021 Program

28

INFANT-PRESCHOOL CP
CLINICAL TRIALS
RECENT ADVANCES FOR EARLY HABIT-ILE IN CHILDREN
WITH CEREBRAL PALSY
Hand and Arm Bimanual Intensive Therapy
Including Lower Extremities has gained a
growing interest since its development in 2011.
This motor-skill learning based intervention uses
functional goals defined by the children and
their parents to promote autonomy and
participation. Its effectiveness has been
demonstrated in school-aged children with both
unilateral and with bilateral CP. This keynote will
focus on the application of the key principles of
HABIT-ILE in pre-school children, the
improvements obtained in pilot studies for early
HABIT-ILE, the first motor and non-motor results as
well as the barriers witnessed in the large
randomized trials running for children 1 to 4 years
old.

Prof. Yannick Bleyenheuft
Professor, Institute of Neuroscience,
Université catholique de Louvain, Bruxelles
Prof. Yannick Bleyenheuft PT PhD, is a Professor at the Institute of Neuroscience, Université catholique de Louvain,
Brussels, Belgium and honorary attached to the Center for Cerebral Palsy Research of the Teachers College,
Columbia University, NY, USA. Yannick Bleyenheuft has training in physiotherapy and rehabilitation, with a
complementary degree in neuroscience and a PhD in movement sciences dedicated to the motor control of
children with cerebral palsy (CP). She is currently holder of the first Chair fully dedicated to intensive
neurorehabilitation in children with CP and has developed HABIT-ILE, an intensive intervention combining
bimanual coordination with a constant lower extremity and/or postural stimulation, which has been successfully
applied both in children with unilateral and with bilateral CP.

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INFANT-PRESCHOOL CP
CLINICAL TRIALS
UPDATE ON THE VISIBLE STUDY FOR SEEING IMPAIRED
INFANTS
Vision difficulties in the context of rehabilitation
are often under-recognised, under-treated and
under-researched, pointing to an urgent need
for the development of evidence-based vision
interventions for infants and toddlers with
cerebral vision impairments (CVI).
VISIBLE is a multisite pragmatic pilot randomized
controlled feasibility and acceptability study of a
6-to-9 month early vision-awareness & parentdirected environmental enrichment program for
infants with severe cerebral vision impairment
(CVI) and at high risk of cerebral palsy (CP). This
intervention protocol is built on previous
evidence of the importance of parent
involvement, multidisciplinary team support, goal
orientation, utilization of the vision channel, and
environmental enrichment.
A two group Randomised Controlled Trial (RCT)
(n = 32) is being conducted. Infants age 3-6
months old at entry, with a severe visual
impairment and at high risk of CP, are enrolled
and randomised to receive the VISIBLE

intervention plus standard community-based
care (Soc), compared to SoC alone. A
physiotherapist and occupational therapist, or
neurodevelopmental therapist (TNPEE – in Italy)
visit the family in their home (or through
teleconference) once every two weeks.
Between visits, intervention is provided by
parents in their home including environmental
enrichment and vision-aware goal directed
developmental activities.
In this presentation we will review the study
progress, challenges and opportunities
presented by limited possibilities for in-person
visits, and important elements in carrying out a
research protocol with severely-effected young
infants and their families.
We will also review the structure of training and
continued communication framework
established between the sites for maintaining
fidelity of assessment and treatment, and for
individualised intervention strategies sharing.

A/Prof. Andrea Guzzetta
Head of Stella Maris Infant Lab for Early-intervention (SMILE), the University of Pisa, Italy
Associate Professor Andrea Guzzetta is an Associate Investigator on the CRE and a member of the Early
Detection and Neuroimaging theme.
Dr Guzetta is Head of Stella Maris Infant Lab for Early-intervention (SMILE), A/Professor at the University of
Pisa, Medical School, and an accredited international trainer with the General Movements Trust. He will
provide expertise in both clinical and neuroimaging data as a Member of the Early Detection and
Neurosciences theme in the CRE.
Dr Guzzetta's main research has focused on the effects of early brain damage on the development of
different functions and the underlying neuroplastic mechanisms, with the final aim to improve early
intervention paradigms and outcomes. In his still relatively short research career, he has provided
significant contribution to a number of research questions in the area, thanks to his compound training
experiences in some of the most productive European centres in the field, including the Hammersmith
Hospital and the Visual Development Unit in London (Great Britain) and the Department of Child
Neurology in Tuebingen (Germany).

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INFANT-PRESCHOOL CP
CLINICAL TRIALS
BORNTOGETHER: IMPLEMENTATION OF EARLY DETECTION AND
EARLY INTERVENTION SERVICE DELIVERY IN INFANTS AT RISK FOR
CEREBRAL PALSY TO PROMOTE INFANTS’ PSYCHOMOTOR
DEVELOPMENT AND MATERNAL HEALTH
Despite advances in the medical management
of high-risk pregnancies and deliveries, cerebral
palsy (CP) remains the most common physical
disability in childhood in high and low-to-middle
income (LMIC). In addition, caregivers of
children with CP are at higher risk of needing
psychiatric support services, which further
increases health and socio-economic burden to
the families. Declining birth prevalence and
lower severity have been reported in Australia.
International evidence-based clinical practice
guidelines for the early detection of cerebral
palsy were been published in 2017. Medical
systems support and trainings are needed for
system-wide implementation into clinical service
delivery in Europe and LMIC.

The overarching aim of the BORNTOGETTHERE
project is to exploit current evidence on early
detection and efficacy of EI for infants at high
risk of CP by implementing the International
Clinical Practice Guideline. Within this
framework, the presentation will review this multinational project, funded by European
Commission and the Australian National Health
and Medical Research Council, involving the
Tuscan region of Italy, Denmark, the Netherlands,
Georgia, Sri-Lanka and parts of remote regions in
Australia.
By focusing on the multifaceted knowledge
translation planned for the project we will review
also the limitations and opportunities presented
by the shift of in person trainings to online
learning platforms.

A/Prof. Andrea Guzzetta
Head of Stella Maris Infant Lab for Early-intervention
(SMILE), the University of Pisa, Italy
Associate Professor Andrea Guzzetta is an Associate Investigator on the
CRE and a member of the Early Detection and Neuroimaging theme.
Dr Guzetta is Head of Stella Maris Infant Lab for Early-intervention (SMILE),
A/Professor at the University of Pisa, Medical School, and an accredited
international trainer with the General Movements Trust. He will provide
expertise in both clinical and neuroimaging data as a Member of the
Early Detection and Neurosciences theme in the CRE.
Dr Guzzetta's main research has focused on the effects of early brain
damage on the development of different functions and the underlying
neuroplastic mechanisms, with the final aim to improve early intervention
paradigms and outcomes. In his still relatively short research career, he
has provided significant contribution to a number of research questions in
the area, thanks to his compound training experiences in some of the
most productive European centres in the field, including the
Hammersmith Hospital and the Visual Development Unit in London (Great
Britain) and the Department of Child Neurology in Tuebingen (Germany).

Olena Chorna
Research Coordinator, Stella Maris Infant
Lab for Early-intervention (SMILE), the
University of Pisa, Italy
Olena Chorna currently works at the Department of
Developmental Neuroscience, IRCCS Fondazione
Stella Maris. She is a PhD candidate in Neuroscience
at the University of Florence. Olena does research in
Pediatrics, Neurology and Clinical Trials.

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INFANT-PRESCHOOL CP
CLINICAL TRIALS
UPDATE ON THE LEAP-CP PROGRAMS - RCT OF PEER
DELIVERED EARLY INTERVENTION FOR CHILDREN WITH
CP: INDIAN AND ABORIGINAL & TORRES STRAIT
ISLANDER TRIALS
Background/Objectives: To determine whether a
peer delivered early intervention program (LEAPCP: Learning through Everyday Activities with
Parents) is more effective than a WHO health
advice program (CAU). An update of the trial
results from India (i) will be presented, along with
progress on the Australian Aboriginal and Torres
Strait Islander adaptation (ii).
Study Design: Single blind controlled trial.
Study Participants and Setting: Infants aged 12
weeks corrected age (CA) to 12 months CA
identified as at high-risk of CP (absent fidgety on
General Movements and scores below published
cut-offs on Hammersmith Infant Neurological
Examination, HINE) are eligible for the LEAP-CP
trials. Families are randomized using central
concealed random allocation to receive either
the LEAP-CP (plus CAU) or health advice (plus
CAU).
Material/Methods: LEAP-CP and Health advice
are provided from age of identification (12-52
weeks) for 30 weeks of home visits by a peer
trainer (community member/ health worker from
local community). LEAP-CP components
included: (i) goal- directed training (parentidentified goals, including motor, feeding,
communication, vision); (ii) LEAP-CP Learning
Games (based on the Learning Games
curriculum modified for CP); (iii) parent
education (including active learning strategies,
responsive parenting, caregiver mental health,
feeding, nutrition and general health). LEAP-CP is
based on a parent coaching model which
promotes caregiver problem solving and selfdetermination.
(i) Primary infant outcome (India): mobility
domain of the Paediatric Evaluation of
Disability Inventory-Computer Assisted
Testing (pre-, post-intervention, and final
outcome at 18 months corrected age).
Secondary child outcomes included the
Peabody Developmental Motor Scales-2,

the Bayley Scales of Infant Development3, Canadian Occupational Performance
Measure, and growth anthropometry
(length and weight z scores). The primary
caregiver outcome was the Depression
Anxiety and Stress Scale (DASS).
(ii) Primary infant outcome (Australia):
composite of Peabody and Bayley
(cognition and communication). Primary
caregiver outcome: DASS
Results:
(i) Final data in India were available for 117
of the 151 infants randomised to the
study (reasons for withdrawal: eleven
prior to commencing the program, eight
deceased, five moved region, four due
to family pressure/ problems, one due to
illness, four did not wish to continue); 84
males, mean age 25.6 ±11.7 weeks CA,
36.8% of HIINE scores <40 [non-ambulant
CP]). Final analysis will be presented.
(ii) Recruitment has not yet commenced for
the Australian study, but an update on
study progress will be provided.

Dr Katherine Benfer
NHMRC Early Career Research Fellow,
The University of Queensland
Dr Benfer leads the LEAP-CP program (Indian and Australian trials).
She has had an outstanding research trajectory since completing
her PhD in 2015, having received approximately $1 million in
research funding as a CI, including two NHMRC personal support
grants (Early Career Fellowship – Health Professional and Medical
and Dental Postgraduate Scholarship), the prestigious Endeavour
QEII Diamond Jubilee Post-Doctoral Research Fellowship
(Commonwealth Government, top female researcher); 18 peer
review publications and over 40 national and international
conference presentations.

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NOTES

International Hot Topics in Cerebral Palsy Research 2021 Program

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NOTES

International Hot Topics in Cerebral Palsy Research 2021 Program

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Acknowledgements
AusCP-CTN CRE Chief Investigators:

Prof. Roslyn Boyd, Prof. Iona Novak, Prof. Euan Wallace, Prof. Nadia Badawi,
A/Prof. Michael Fahey, Prof. Stephen Rose, Prof. Paul Colditz, Prof. Jenny Ziviani,
Prof. Catherine Elliott, Prof. Susan Stott.

AusCP-CTN CRE Associate Investigators:

A/Prof. Andrea Guzzetta, Dr Sarah McIntyre, A/Prof. Leanne Sakzewski,
Dr Jurgen Fripp, Dr Koa Whittingham, Dr Katherine Benfer, Dr Catherine Morgan,
A/Prof. Ray Russo, Dr Lee Barber, Prof. Peter Davies.

Queensland Cerebral Palsy & Rehabilitation Research Centre team:
Prof. Roslyn Boyd, Dr Priya Edwards, A/Prof. Leanne Sakzewski, Dr Koa
Whittingham, Dr Katherine Benfer, Dr Sarah Reedman, Dr Catherine Mak, Dr
Tracey Evans, Dr Shaneen Leishman, Dr Natalie dos Santos, Dr Swetha Philip,
Dr Andrea McGlade, Ms Ellena Oakes, Ms Sarah Gibson, Ms Christine Finn, Ms
Kym Morris, Ms Sarah Goodman, Ms Bernadette Shannon, Mr Mark Chatfield, Ms
Nataya Branjerdporn, Ms Rosemary Gilmore, Dr Lee Barber, Dr Joanne George,
Dr Lisa Copeland, Dr Kristie Bell, Dr Chris Carty, Ms Camilla Davenport, Ms Carly
Luke, Ms Rebecca Caesar, Ms Felicity Read, Ms Jane Wotherspoon, Ms Kavindri
Kulashinghe, Ms Leeann Ramsamy, Ms Kate McLeod, Ms Helen Fitzmaurice, Ms
Jessica Thackery, Ms Janine Cezar, Ms Siona Saplos, Dr Annie Chen.



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