early detection & early intervention for cp · hand arm bimanual intensive training including...
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Early Detection & Early Intervention for CP
Roslyn Boyd, The University of Queensland
QLD Paediatric Society, November 2018
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Prof Roslyn BoydProf Iona NovakProf Euan WallaceProf Nadia BadawiA/Prof Michael FaheyProf Stephen RoseProf Paul ColditzProf Jenny ZivianiProf Cath ElliottProf Susan Stott
Dr Joanne GeorgeDr Kerstin PannekDr Hayley Smithers-Sheedy Dr Cathy MorganA/Prof Mark ChatfieldDr Roz WardDr Sian Williams
Dr Lee BarberProf Peter DaviesDr Andrea GuzzettaDr Sarah McIntyreDr Leanne SakzewskiA/Prof Anthony SmithDr Koa WhittinghamProf Rob WareA/Prof Ray Russo
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AusCP-CTN
Mission Detect cerebral palsy earlier
Fast-track children to new neuro-protectants and early interventions;
Vision decline in the rate & reduced severity of CP
improve health outcomes
enable full participation in society.
Conduct multi-site randomised clinical trials to develop and test new interventions and rehabilitation methods;
Transfer new knowledge to enhance clinical practice;
Develop international clinical practice guidelines guided by a consumer network.
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Pre-clinical &
Neuropro-tection
Early Detection & Neuro-Imaging
Clinical Trials
Knowledge Translation
Engagement & Health
Policy
New Knowledge Generation
Training (Clinical & Research)
Implementation & Translation
Health Economics & Telehealth Solutions
1 2 3 4 5
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We wish to partner with you
PhD Top-UpScholarships
Training in General
Movements Training in Hammer-
smith (HINE)
Recruitment and conduct Clinical Trials
Support Your Research Along the Pipeline
Grant Writing
Workshops
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Professor Nadia BadawiIona Novak, Hayley Smithers-Sheedy, Sarah McIntyre
1
Pre-clinical & Neuroprotection
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Prevention of prematurity
43% of people with CP were preterm compared with 7.2% live births
Mcintyre, Morgan, Walker, Novak 2011 and ACPR report 2016
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Genetics
Mcintyre et al, 2016, McMichael et al, 2015; Oskoui et al, 2015
Birth defects
21-40%Genetic differences
14%
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Antenatal SteroidsMagnesium Sulphate
Caffeine Smoke-free legislation
CP decreased
30%
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Hypothermia Kernicterus Prevention
CP decreased
15%
Child Restraints
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Erythropoietin
Huppi et al, 2015
Improves white matter development in preterm babies
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0.0
0.5
1.0
1.5
2.0
2.5
3.0
1995-1997 1998-2000 2001-2003 2004-2006 2007-2009
Rat
e o
f ch
ildre
n w
ith
CP
p
er 1
00
0LB
South Australia Victoria Western Australia
Declining prevalence of pre/perinatally acquired CP
P=0.044P=0.019
p<0.001
Mcintyre et al, AUSACPDM 2018; Australian Cerebral Palsy Register 2016
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Australian Cerebral Palsy Register (2016)
Age of Cerebral Palsy Diagnosis
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Severity of Physical Disability
1980 – 1984 2005 – 2009
Walks 50% 66%Uses wheelchair 50% 34%
Reid et al, 2016
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Co-Occurring Conditions
1980 – 1984 2005 – 2009
Epilepsy 44% 24%Intellectual Disability 64% 47%
Reid et al, 2016
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Associate Professor Michael Fahey
1
Pre-clinical & Neuroprotection
Nadia Badawi, Euan Wallace, Paul Colditz
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Melatonin Reduces Brain Injury
Control HypoxiaHypoxia +
Melatonin
Clinical findings 0% 60% 30%
0.1 0.3 0.1
Dying cells 3.5 100 10
MRI/MRS
Melatonin reduces markers of brain injury following hypoxia
Melatonin could potentially be used to treat newborns with brain injury.
James Aridas
Appears additive to coolingControl UCO UCO+MEL UCO+HYPO UCO+MEL+HYPO
0.0
0.1
0.2
0.3
0.4
0.5
La
c/N
AA
Ra
tio
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Creatine kinase isoforms located in:
• cerebellum,
• choroid plexus,
• hippocampal granular layer
• pyramidal cellsCreatine Deficiency Syndrome:
• delayed onset mental retardation,
• developmental delays,
• lack of motor co-ordination
• epilepsy and autism-like syndromes
Hypotheses
Following premature birth there will be a period when peripheral and cerebral
creatine levels fall.
This will jeopardize normal brain metabolism and development, predisposing
the infant to neurological decline.
With identification of this creatine deficiency, and a better understanding of
creatine accretion by the preterm infant, we can normalize cerebral creatine
levels, through infant dietary creatine supplementation.
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Stephen Rose, Jurgen Fripp, Kerstin Pannek, Ros Boyd, Michael Fahey
2
Early Detection & Neuroimaging
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Confirmation of CP diagnosis
36-60 months
Diagnosis Clinical
patterns From 12-24
months
12weeks CA
TermPreterm
TimelineOnly 26% CP diagnosed before 6-months50% CP is Preterm, 50% term born
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Sydney November 20182 basic, 1 advancedCathy Morgan
Melbourne November 20182 basic, 1 advancedAlicia Spittle
Queensland: Brisbane & Cairns March 20192 basic, 1 advancedRos Boyd, Jo George
Future General Movements Training
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Western AustraliaJane ValentineKate Langdon
NZAnna MackaySian Williams
NSWCathy MorganIona Novak Cathryn CrowleMichelle Juarez
VictoriaAlicia Spittle, Abbey Eeles, Catherine Hough, Cate Clancy
Queensland: Jo George, Rachel Thomas, Carly Dickinson, Kym Morris, Bernadette Shannon
South AustraliaFelicity BakerKirstie Morgan
Hammersmith Trainers
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Accurate biomarkers
MRI markers of brain injury
From preterm, TEA to childhood
Clinical correlates
Screening for early detection in preterm
and at risk term neonates
Measure effects of neuroprotection
Test early interventions
Prognosis/ prediction of outcome
3. PREMO/NEMO toolboxes
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Clinician Champions of ChangeTrain the TrainersFrom the accredited experts (GMs & HINE)
State-wide ethics for data sharing:• Clinicians (Paediatrians, Neonatologists,
Neurologists, PT, OT, Nursing)• 2 stage consent• Screening• Referral to early intervention
2. QEDIN: QLD early detection & early intervention network
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Automated MRI Quantification
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Cloud-based quantitative radiological reporting
• Right infants
• Right time
• Right intervention
• Right Intensity
• Reduced costs
• Better outcomes
• Better prediction
• Targeted Surveillance
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REACH VISIBLEPARENTING 101
EARLY PACT GAME
4. Fast track & test early intervention
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REACH RCT [Unimanual v Bimanual]
70-90 hours of Baby CIMT n=75
70-90 hours of Bimanual Therapy n=75
Roslyn Boyd, Jenny Ziviani, Leanne Sakzewski, Iona Novak, Nadia Badawi, Catherine Elliott, Sue Greaves, Kerstin Pannek, Andrea Guzzetta
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GAME Weekly home visits until 2nd
birthdayn=150
Usual Care n=150
Goals Activities Motor Enrichment RCT
Prof Iona Novak, Dr Cathy Morgan, Prof Nadia Badawi, Prof Ros Boyd, A/Prof Alica Spittle, Prof Russell Dale, Adrienne Kirby, Prof Rod Hunt, Dr Koa Whittingham, Dr Kerstin Pannek
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LEAP-CP RCT [Learning through Everyday Activities with Parents]
Early detection of CP + Early Intervention [Parent Delivered] in
Low Resource Setting India
Waitlist Control
Dr Katherine Benfer, Prof R Boyd, Prof I Novak, Dr C Morgan, Dr K Whittingham
QEII Endeavour Fellow
n=527 referred, 90% screened, 30% CP, 100/120 recruited
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VISIBLE RCT [Central Visual Impairment]
Fortnightly home visit from < 6-12 months
of active goal directed training with
salience & consistency of the
environment
Waitlist Control
CIA: A/Prof Andrea Guzzetta, Prof Roslyn N Boyd, Prof Iona Novak, Dr Cathy Morgan, Dr Alison Salt, Prof Catherine Elliott, Dr Kerstin Panneck, Dr Jurgen Fripp.
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Early PACT RCT
Parenting Acceptance & Commitment
Therapy in newly
diagnosed families n=60, using online
training
Waitlist Control
Dr Koa Whittingham, Prof Ros Boyd, Dr Jeannie Sheffield
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Participate RCT
Dr Leanne Sakzewski, Prof Roslyn N Boyd, Prof Iona Novak, Prof Catherine Elliott, Dr Cathy Morgan, Prof Annette Manjnemer, Dr David Rowell, Prof Robert Ware
Physiotherapy & Motivational
Interviewing to increase participation in motivating physical
activities of choice
Waitlist Control
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Hand Arm Bimanual Intensive Training Including Lower Extremity training HABIT-ILE RCT
65 hours of HABIT-ILE will be achieved through a 2 week intensive
camp
GMFCS II-IV
Waitlist Control
Dr Leanne Sakzewski, Prof Roslyn N Boyd, Prof, Yannick Bleyenheuft, Prof Iona Novak, Prof Catherine Elliott, Dr Cathy Morgan, Dr Kerstin Panneck, Dr David Rowell, Prof Robert Ware
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Professor Iona Novak
Dr Leanne Sakzewski
4
Knowledge Translation
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Australasian CP Clinical Care Network
Australasian Cerebral Palsy Clinical Trials
Network
NSW: Uni of Sydney, Cerebral Palsy Institute, Westmead
Childrens Hospital.
VIC: Ritchie Centre, Monash Uni, Monash Medical Centre
WA: Princess Margaret Hosp. Curtin Uni, Telethon Kids
Research: AACPDM, AusAACPDM, IAACP.
Practice: 5 State-wide CP Rehabilitation services
Education: Universities,CP Training, RACP, FRARM.
Consumer Council & Network
Policy: NDIS, Better Start
SA: Adelaide Children’s Hospital, SA Rehab service
IMPACT: International Multidisciplinary Prevention
& Cure Team NetworkNZ: University of Auckland
Starship Children’s Hospital
National and International Translation Networks
QLD: UQ QLD CP Research (QCPRRC), Perinatal Research
Centre, CSIRO
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Professor Jenny ZivianiProfessor Catherine ElliottDr Leanne SakzewskiDr Sarah McIntyre
5
Engagement & Public Policy
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Consumer and clinician training
Anne McKenzie, AM,Telethon Kids Institute
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Upcoming Events
SYDNEY November 2018
General Move-mentsTraining
HINETraining
Hot Topics Update
Prof Steve Miller Sick Kids
MELBOURNE November 2018
General Move-mentsTraining
PERTH July 2018
Grant WritingWorkshop
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Hot Topics: Sydney Monday 5th November
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Brisbane: Friday 30th November, CHRC (Muscle in CP)
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Given rise to novel neuroprotective studies
In 5-years time
Fostered the career development of researchers to build capacity
Accelerated translation from clinical trial to clinical practice to improve health outcomes
Engaged with consumers & researchers across 5 states
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QEDIN-CPQueensland Early Detection & Early Intervention Network
Project lead: Prof Roslyn Boyd
Clinical Co-ordinator: Dr Joanne George
Ethics & Governance Co-ordinator: Dr Tracey Evans
www.qcprrc.uq.au/[email protected]
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W: www.cre-auscpctn.centre.uq.edu.au
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