in Cerebral Palsy Research Forum 5 March 2021 Australian Eastern Standard Time
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
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
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
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 4
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
& 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 6
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 7
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 8
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