Australasian Cerebral Palsy Health Network (Aus-CP-Health-Net) workstreams

Workstream 1: New interventions for children with CP (0–18 years)

This workstream aims to address four major issues for children with CP:

Issue 1: Children with CP are too sedentary and are not physically active enough.
Issue 2: Children with CP develop 90% of their motor capacity by age 5 years.
Issue 3: Poor sleep, mental health and chronic pain are under-reported and not managed.
Issue 4: Nutritional status and time spent sedentary impact growth, muscle and bone health.

This series of studies are led by Workstream 1 Lead, Professor Leanne Sakzewski and co-led by Professor Roslyn Boyd. The objective of these studies is to generate new knowledge about effective interventions that can then be tested clinically in translation projects.

Workstream 1 projects addressing issues 1 and 2 are below:

Workstream 1: New interventions for children with CP (0–18 years)	Project Lead
Project 1: ACTIVE STRIDES-CP Intensive mobility and cycling training for 5–15-year-old children with bilateral CP. Goal: Determine if treadmill training + functional electrical stimulation cycling improves mobility and PA compared to usual care. Sample: 150 children, GMFCS III–IV. Funding: NHMRC Clinical Trials Cohort Study. Recruiting NOW at sites in Brisbane, Melbourne, and Perth.	Professor Leanne Sakzewski
Project 2: ACTIVE START Participation-focused intervention for young children (3–7 years) to improve PA and reduce sedentary behaviour. Goal: First RCT of scalable participation-focused intervention using motivational interviewing. Sample: 60 children. Funding: NHMRC Fellowship Funds. Recruitment closed.	Professor Leanne Sakzewski
Project 3: Running4Health Frame Running for 7–21-year-olds with CP to improve motor capacity, cardio-respiratory fitness and bone health. Sample: 96 children/adolescents. Funding: MRFF ECR Grant. Recruitment closed.	Professor Leanne Sakzewski
Project 4: CO-OP RCT Cognitive Orientation to Occupational Performance to improve independence in daily life activities for children with CP. Sample: 64 children aged 8–15 years. Funding: MRFF application planned.	AI Dr Michelle Jackman
Project 5: LEAP Program For First Nations families and LMIC settings to improve multidomain outcomes of infants with CP and neurodevelopmental disorders. Goal: Implement early detection and intervention in remote and low-resource settings. Funding: EU Horizon Grant.	AI Dr Kath Benfer
Project 6: A Very Early Rehab Trial for Infants with CP/NDD / Baby Habitile Intensive motor training adapted for infants (3–18 months) at high risk of CP. Goal: Determine preliminary efficacy and feasibility. Funding: NHMRC Synergy Grant.	Professor Ros Boyd Professor Leanne Sakzewski

Workstream 1: New interventions for children with CP (0–18 years)

Project Lead

Project 1: ACTIVE STRIDES-CP

Intensive mobility and cycling training for 5–15-year-old children with bilateral CP. Goal: Determine if treadmill training + functional electrical stimulation cycling improves mobility and PA compared to usual care. Sample: 150 children, GMFCS III–IV. Funding: NHMRC Clinical Trials Cohort Study. Recruiting NOW at sites in Brisbane, Melbourne, and Perth.

Professor Leanne Sakzewski

Project 2: ACTIVE START

Participation-focused intervention for young children (3–7 years) to improve PA and reduce sedentary behaviour. Goal: First RCT of scalable participation-focused intervention using motivational interviewing. Sample: 60 children. Funding: NHMRC Fellowship Funds. Recruitment closed.

Professor Leanne Sakzewski

Project 3: Running4Health

Frame Running for 7–21-year-olds with CP to improve motor capacity, cardio-respiratory fitness and bone health. Sample: 96 children/adolescents. Funding: MRFF ECR Grant. Recruitment closed.

Professor Leanne Sakzewski

Project 4: CO-OP RCT

Cognitive Orientation to Occupational Performance to improve independence in daily life activities for children with CP. Sample: 64 children aged 8–15 years. Funding: MRFF application planned.

AI Dr Michelle Jackman

Project 5: LEAP Program

For First Nations families and LMIC settings to improve multidomain outcomes of infants with CP and neurodevelopmental disorders. Goal: Implement early detection and intervention in remote and low-resource settings. Funding: EU Horizon Grant.

AI Dr Kath Benfer

Project 6: A Very Early Rehab Trial for Infants with CP/NDD / Baby Habitile

Intensive motor training adapted for infants (3–18 months) at high risk of CP. Goal: Determine preliminary efficacy and feasibility. Funding: NHMRC Synergy Grant.

Professor Ros Boyd

Professor Leanne Sakzewski

Workstream 1 projects addressing issues 3 & 4 are below:

Workstream 1: New interventions for children with CP (0–18 years)	Project Lead
Project 7: Adolescent Transition Predict CP Study Comprehensive evaluation of adolescents with CP at 16–18 years to examine physical, cognitive, bone health, pain, sleep, cardio-respiratory fitness and participation outcomes. Funding: NHMRC CTC application.	Professor Ros Boyd
Project 8: Sleep Monitoring and Intervention Co-designed sleep intervention focused on pain management for children with CP. Funding: MRFF grant.	A/Prof Jas Chawla
Project 9: Body Weight Support Treadmill Training and Whole-Body Vibration For children with GMFCS IV–V to improve pain, sleep, cardio-respiratory fitness and bone health. Funding: Planned pilot in CRE.	Dr Dayna Poole
Project 10: PACT ONLINE Online parenting support grounded in Acceptance and Commitment Therapy for families of children with neurodevelopmental disabilities. Funding: MRFF Allied Health Clinician Research Grant. Recruitment at >197	A/Prof Koa Whittingham
Project 11: THRIVE Online ACT intervention for adolescents with CP to improve mental health, sleep and pain. Funding: CRE Aus-CP-Health-Net for pilot.	A/Prof Koa Whittingham, Dr Jas Chawla

Workstream 2: Implementation of new interventions: Translation and implementation supports

This workstream involves several projects aimed to implement interventions we have already tested and found to be effective into clinical practice. In this workstream we will also develop international clinical practice guidelines as a tool for clinicians to guide “best practice”.

This workstream addresses the important issue: Clinicians need training and supports to learn and implement new interventions.

Workstream 2: Implementation, translation and implementation supports	Project Lead
Very Early intervention: Baby constraint induced movement therapy and baby bimanual upper limb training for infants at high risk of unilateral cerebral palsy.	Professor Roslyn Boyd
Intensive motor training for children with CP (Hand Arm Bimanual Intensive Training Including Lower Extremity- HABIT-ILE)	Professor Leanne Sakzewski
Participate-CP to improve physically active leisure participation for CP	Professor Leanne Sakzewski
CP-KASP (Cerebral Palsy Knowledge, Advocacy Skills, and Support Program): co-designed with families to optimise evidence-based support through the NDIS.	Professor Leanne Sakzewski and Dr Fiona Russo
Clinical Practice Guideline: Interventions to improve Physical Activity Participation for children with CP	Professor Leanne Sakzewski
Clinical Practice Guideline: Interventions to improve bone health for children with CP	Professor Craig Munns
Clinical Practice Guidelines: Interventions to improve mental health outcomes for children with CP.	A/Professor Koa Whittingham
Clinical Practice Guidelines: Interventions to improve pain in children with CP.	Professor Leanne Sakzewski, Professor Roslyn Boyd, Clinical lead Dr Priya Edwards

Workstream 3: Epidemiological causal pathway and precision medicine studies

Workstream 3 aims to increase our knowledge of earlier biomarkers of CP including genomics to guide precision medicine in practice. This workstream is led by Professor Jozef Cecz and co-led by Dr Kerstin Pannek.

Workstream 3: Epidemiological causal pathway and precision medicine studies	Project Lead
Project 1: Population Cohorts of very early biomarkers for personalised medicine (EPINO Early Prediction of Infant Neurodevelopmental Outcomes) Prospective cohort study of MRI, EEG, genetic, proteomic screening and early biomarkers in 460 infants at high risk of CP/NDD. Funding: NHMRC CP Synergy Program.	Professor Roslyn Boyd
Project 2: Personalised Medicine Population Cohorts and data from RCTs on response to intervention. Genetic screening of infants/children at high risk of CP to guide treatment response and personalised medicine. Funding: MRFF Genomics Grant.	Professor Jozef Gecz.

Workstream 3: Epidemiological causal pathway and precision medicine studies

Project Lead

Project 1: Population Cohorts of very early biomarkers for personalised medicine (EPINO Early Prediction of Infant Neurodevelopmental Outcomes)

Prospective cohort study of MRI, EEG, genetic, proteomic screening and early biomarkers in 460 infants at high risk of CP/NDD. Funding: NHMRC CP Synergy Program.

Professor Roslyn Boyd

Project 2: Personalised Medicine Population Cohorts and data from RCTs on response to intervention.

Genetic screening of infants/children at high risk of CP to guide treatment response and personalised medicine. Funding: MRFF Genomics Grant.

Professor Jozef Gecz.

Workstream 4: Research priority setting and Policy

Workstream 4 aims to work with our community of people with lived experience of CP and their carers to reset priorities for future research. We aim to do this through consumer-led priority settings and co-design of research agendas through scoping reviews and global engagement. This workstream is led by Adjunct Professor Sarah McIntyre.

Workstream 4: Research Priority Setting and Policy	Project Lead/s
Project 1: Research Priorities set by people with lived experience (PWLE)	Adj Professor Sarah McIntyre and Dr Shona Goldsmith.
Project 2: Review with national and international stakeholders to drive policy agenda (CP Strategy)	Adj Professor Sarah McIntyre and Dr Shona Goldsmith.