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W E L C O M E2nd Annual UNSW Paediatric Research Week

Programme 201410th - 14th November 2014

2ND ANNUAL UNSW PAEDIATRIC RESEARCH WEEK

MONDAY 10 NOV

9:30am-1:00pmGood Clinical Practice (GCP) TrainingRegistration NecessaryJohn Beveridge Lecture Theatre

2:00pm-5:00pmAboriginal Child Health - Research & Teaching WorkshopJohn Beveridge Lecture Theatre

TUESDAY 11 NOV

10:00am-11:00amBiostatistics WorkshopJohn Beveridge Lecture Theatre

1:00pm-2:00pmYoung Investigators Seminar SeriesSpeakers: Dr Antoinette Anazodo Dr Sandra ChuangJohn Beveridge Lecture Theatre

2:00pm-4:00pmWorkshop: Research or quality improvement projects? How to make it work in practiceJohn Beveridge Lecture Theatre

6:00pm-7:00pmJohn Beveridge Oration Registration NecessaryJohn Beveridge Lecture Theatre

WEDNESDAY 12 NOV

12:30pm-2:00pm2nd UNSW Paediatric ILP AwardsJohn Beveridge Lecture Theatre

2:00pm-4:00pmAllied Health & Nursing Research SymposiumJohn Beveridge Lecture Theatre

THURSDAY 13 NOV

All DayResearch PostersJohn Beveridge Lecture Theatre Foyer

1:00pmWestfield Research Laboratories TourRegistration NecessaryWestfield Research Lab

FRIDAY 14 NOV

All DayResearch PostersJohn Beveridge Lecture Theatre Foyer

9:00am-12:30pm2nd Annual UNSW Paediatric Research ShowcaseJohn Beveridge Lecture Theatre

2:05pm-2:15pmWinners of 2nd UNSW Paediatric ILP Awards AnnouncedJohn Beveridge Lecture Theatre

2:15pm-4:00pm2nd Annual UNSW Paediatric Research Showcase cont’dJohn Beveridge Lecture Theatre

Monday 10th - Friday 14th November 2014

POSTPONED

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2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalMonday 10th November - Friday 14th November

CONTENTS

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GOOD CLINICAL PRACTICE TRAINING2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalMonday 10th November | 9:30am-1pm

Hosted by Sydney Children’s Hospital Clinical Research CentreRegistrations Necessary! Fee applies.

Contact: Nisha Berthon-Jones Nisha.Berthonjones@sesiahs.health.nsw.gov.au | 9382 1757

The Sydney Children’s Hospital Clinical Research Centre (SCH CRC) in conjunction with UNSW Paediatric Research Week will be holding ICH-GCP Training on Monday 10th November.

Places are strictly limited, to reserve you spot - please email Nisha Berthon-Jones, Manager, SCH CRC.Nisha.BerthonJones@sesiahs.health.nsw.gov.au | 9382 1757

The workshop is licenced through the Paediatric Trials Network Australia.

This course is interactive and an attendance certificate is issued at the end which can be placed in training folders as required for clinical trials.

Workshop Outline:

‘Understand the principles of GCP and how to apply them to all human research projects’

Australian researchers undertaking drug and device research must comply with the TGA’s Notes for Guidance on Good Clinical Practice (GCP), but GCP is not only relevant to drug and device research, it guides us in good practice for all human research.

This workshop will provide you with an understanding of the key GCP principles and how to apply them.

Good clinical practice (GCP) is an international quality standard that is provided by the International Conference on Harmonisation (ICH), an international body that defines standards, to regulate clinical trials involving human subjects.

GCP enforces guidelines on ethical aspects of a clinical study. High standards are required in terms of comprehensive documentation for the clinical protocol, record keeping, training, and facilities, including computers and software. Quality assurance and inspections ensure that these standards are achieved. GCP aims to ensure that the studies are scientifically authentic and that the clinical properties of the investigational product are properly documented.

Ongoing research shows that whether conducting research involving a new drug, a behavioural intervention, or an interview or survey, GCP provides investigators and their study teams with the tools to protect human subjects and collect quality data.

Stage of Learning Content OutlineReflection/collaborative Ice-breaker activityKnowledge What is GCP Presentation:

• Why is it important?• What happens if you are not compliant?

Reflection/modelling/collaborative Activity 1 - Identifying GCP PrinciplesReflection/modelling/ collaborative/knowledge Discuss each example and the principles, mistakes etc.Knowledge Audits PresentationReflection/modelling/collaborative/knowledge Activity 2 – You are the auditorReflection/modelling/collaborative/knowledge Discussion of audit findingsReflection Summary of content

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ABORIGINAL CHILD HEALTH: RESEARCH & TEACHING2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalMonday 10th November | 2:00pm-5:00pm

PROGRAMME:(Please Note: May be subject to change)

Chair: Dr Sue Woolfenden

2:10pm: Dr Suzie GardnerCreating a Picture of Aboriginal Child Health in our area.

2:40pm: Lola Callaghan, Michelle Jersky, Jennifer WintersWorking together in health and education with Aboriginal families for SCH network.

3:10pm: Drs Justine Noble,Terry YoongNew Directions

3:40pm: Dr Jenny McDonaldThe GUDAGA PROJECT

4:10pm: Wendy Bryan Clothier and Lizzy MayersAboriginal Health

4:30pm: Questions and DiscussionHow can we work together in research, training and service delivery in Community Child Health to improve Aboriginal Child Health?

The Department of Community Child Health at Sydney Children’s Hospital in conjunction with UNSW Paediatric Research Week will be holding an Aboriginal Child Health: Research & Teaching Session on Monday 10th November.

This half-day workshop on Aboriginal child health services and research in NSW was originally designed for Community Child Health Trainees but is open to all interested health professionals and students.

Hosted by the Department of Community Child HealthContact: Dr Sue Woolfendensusan.woolfenden@sesiahs.health.nsw.gov.au | 9382 8183

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BIOSTATISTICS WORKSHOP2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalTuesday 11th November | 10am-11am

Kylie-Ann Mallitt will discuss the importance of using the correct statistical analysis in research and the pitfalls and consequences for not doing so.

She will discuss basic statistics including data entry, simple analysis for example from qualitative questionnaire data, and preparing grants, ethics applications, and research protocols.

This session will be beneficial for clinicians, nurses, allied health professionals, higher degree students and undergraduate students.

Presented by: Kylie-Ann Mallitt Biostatistician, Discipline of Paediatrics, School of Women’s & Children’s Health, UNSW Medicine

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YOUNG INVESTIGATORS SEMINAR SERIES2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalTuesday 11th November | 1pm-2pm

During UNSW Paediatric Research Week we have two PhD candidates presenting, both of whom are also clinicians:

Dr Antoinette Anazodo Fertility Understanding through Registry and Evaluation (FUTuRE) Fertility.

Dr Sandra Chuang Non-Invasive Measures of work of breathing during sleep in children.

The Young Investigators Seminar Series occurs approximately twice per month, on a Tuesday from 1pm-2pm in the John Beveridge Lecture Theatre, Level 1, Sydney Children’s Hospital.

The Young Investigators Seminar Series forms part of the annual progress review for higher degree research students (PhD & Masters). It is an opportunity for the students to present their research.

The Young Investigators Seminar Series is a regular event held by the Discipline of Paediatrics, School of Women’s & Children’s Health, UNSW Medicine.

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PROGRAMME:

2:05 PM Chair: Professor Anne CunninghamProfessor of Paediatrics; UNSW Director of Developmental Neurosciences Program; Head of Laboratory Research, Sydney Children’s HospitalThe definition of research, what is research as opposed to quality improvement.

2:30 PM Laurel MimmoQuality Manager/Clinical Improvement Officer‘Quality Improvement at SCHN: Gaining QI Ethics Approval through CHARLI’ The pathway of institutional approval for quality improvement projects not subject to the human research ethics pathway.

2:45 PM Jillian ShuteExecutive Officer - Research Ethics, Sydney Children’s Hospitals NetworkCarolyn CaseyResearch Governance Manager, Sydney Children’s Hospitals NetworkBrief explanation of human research ethics and governance processes at Sydney Children’s Hospitals Network. Where to start, what is required, where to find guidance, and who to ask for assistance.

3:00 PM Dr Keith OoiLecturer, PhD (submitted 2014), Discipline of Paediatrics, School of Women’s & Children’s HealthStaff Specialist, Gastroenterology, Sydney Children’s HospitalSo you want to do a research project? Asking the right questions and choosing a study design.

RESEARCH WORKSHOP2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalTuesday 11th November | 2pm-4pm

RESEARCH OR QUALITY IMPROVEMENT PROJECTS? HOW TO MAKE IT WORK IN PRACTICEThis workshop will feature a number of speakers discussing:

• When studies are research and when they are quality improvement;

• How to turn a clinical question into a research question;

• Research project design and methodologies;

• Approval pathways for projects and support available: quality improvement approval, ethics, and governance.

This workshop has been designed to assist all budding researchers, regardless of the scope and size of the project. Clinicians, nurses, allied health professionals, current and prospective higher degree students are encouraged to attend.

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JOHN BEVERIDGE ORATION2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalTuesday 11th November | 6pm-7pm

Emeritus Professor Gillian Triggs is the President of the Australian Human Rights Commission, taking up her appointment in 2012. She was Dean of the Faculty of Law and Challis Professor of International Law at the University of Sydney from 2007-12 and Director of the British Institute of International and Comparative Law from 2005-7. She is a former Barrister with Seven Wentworth Chambers and a Governor of the College of Law.

Professor Triggs has combined an academic career with international commercial legal practice and worked with governments and international organisations on offshore insurers, World Trade Organisation law and human rights. Her focus at the Commission in on the implementation in Australian law of the human rights treaties to which Australia is a party, and to work with nations in the Asia Pacific region on practical approaches to human rights.

Professor Triggs’ long-standing commitment to legal education builds upon the Commission’s efforts to inform Australians about their fundamental human rights, especially those of children.

Hosted by Sydney Children’s Hospitalhttp://www.schn.health.nsw.gov.au/health-professionals/work-and-learn/learn-with-us/education-and-training-events

Contact: Linda HallLinda.hall@sesiahs.health.nsw.gov.au | 9382 1983

‘Health, human rights and children in immigration detention.’

Professor Gillian TriggsPresident, Australian Human Rights Commission

Presentation 6pm-7pm (refreshments from 5:30pm)

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INDEPENDENT LEARNING PROJECT (ILP) AWARDS2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalWednesday 12th November | 1pm-2pm | Light lunch provided from 12:30pm

2013 Overall Winner - Nadia Perera & Dr Michelle Farrar (supervisor)

In 2013, the Discipline of Paediatrics offered (for the first time) Independent Learning Project (ILP) students the opportunity to submit abstracts on the research they had been undertaking, competing to win one of two UNSW Paediatrics ILP Awards.In 2014, all UNSW Medicine students who were completing their ILP that year in the field of paediatrics were invited to enter. The Discipline received 17 abstracts that were scored by a review panel. Four finalists were selected and will present their work at this special, Sydney Children’s Hospital Grand Rounds.

We encourage all to attend the awards to support our future doctors and see the quality of research they have engaged in this year, under the guidance of our dedicated supervisors.The winners of both awards will be announced at the 2nd Annual Paediatric Research Showcase held on Friday 14th November in the John Beveridge Lecture Theatre, Level 1, Sydney Children’s Hospital.

WELCOME:12:55pm Chair: Dr Sean Kennedy

Senior Lecturer; Director of EducationDiscipline of Paediatrics, School of Women’s & Children’s Health, UNSW Medicine

FINALISTS PRESENTATIONS:1:00pm David Chan Supervisors: Dr Jordan Wood; Conjoint A/Prof David ChampionProject Title: Survey or patients and parents about the pain experience at and after discharge following

appendicectomy at Sydney Children’s Hospital.

1:15pm Bernadette Cameron Supervisors: Dr Sean Kennedy; Dr Fiona MackieProject Title: The natural history of CMV, EBV and BKV viraemia in paediatric renal transplant recipients

reeiving valganciclovir prophylaxis.

1:30pm Kenneth Chew Supervisors: Dr Michelle Farrar; Dr John WidgerProject Title: The impact of nutrition on respiratory function in Duchenne Muscular Dystrophy.

1:45pm Jasmine Chan Supervisors: Conjoint A/Prof Avi Lemberg; Dr Steven LeachProject Title: Tacrolimus Use in Inflammatory Bowel Disease.

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ALLIED HEALTH & NURSING RESEARCH SYMPOSIUM2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre | Level 1 | Sydney Children’s HospitalWednesday 12th November | 2pm-4pm

Paediatric research should not only involve multiple medical sub-specialties but also multiple disciplines therefore the aim of the Symposium is to encourage and cultivate allied health and nursing involvement and collaboration in research at Sydney Children’s Hospital and within the Discipline of Paediatrics.

PROGRAMME:

2:05 PM Chair: Lyn Biviano Department Head, Social Work, The Children’s Hospital at Westmead; Director of Allied Health, Sydney Children’s Hospitals Network

2:15 PM Jessica Menzies (Nutrition & Dietetics) & Jennifer Hughes (Speech Therapy) Growth and feeding problems in patients with Oesophageal Atresia/Tracheoesophageal

Fistula (OA/TOF).

2:30 PM Liz Evans & Zoe Stuttard (Nursing) ‘Let someone know:’ Improving patient and families hospital experience focusing on clinical

bedside handover and multidisciplinary ward rounds.

2:45 PM Leslie Wollin (Occupational Therapy) The Conservative Management of Camptodactyly in Children and Adolescents 0-18 years

of age.

3:00 PM Sara Burrett & Danielle Beston (Social Work) Improving disclosure rates of domestic violence in a paediatric setting.

3:15 PM Irene Mitchelhill (Nursing) Evolution of a patient education website.

3:30 PM Laura Brown (Physiotherapy) Physiotherapy intervention to improve motor co-ordination, postural stability and behaviour in pre-school children born extremely preterm or with extremely low birth weight: a randomised controlled trial.

For the second year, the Allied Health & Nursing Research Symposium will be held during UNSW Paediatric Research Week.

A chance for Allied Health and Nursing staff to present the research they have been involved in with the aim of exhibiting the diverse nature of the professions, and we hope inspiring others to become more involved.

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RESEARCH POSTERS2nd Annual UNSW Paediatric Research Week

John Beveridge Lecture Theatre Foyer | Level 1 | Sydney Children’s HospitalThursday 13th November & Friday 14th November | All day

Research posters previously presented at conferences in 2014 will be displayed during the 2nd Annual UNSW Paediatric Research Week & Showcase.

This is an opportunity to share your research and also view the research of others within paediatrics.

Posters will be displayed in the John Beveridge Lecture Theatre Foyer, Level 1, Sydney Children’s Hospital on Thursday 13th November and Friday 14th November.

Presented a poster in 2014?Want it displayed during Research Week?

Drop it in to the Discipline of Paediatrics offices by Friday 7th NovemberLevel 3 | Emergency Wing | Sydney Children’s Hospital

Posters can be collected post-Research Week (from Tuesday 18th November)

POSTPONED

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WESTFIELD LABORATORY TOUR2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre Foyer | Level 1 | Sydney Children’s HospitalThursday 13th November | 1pm

Professor Anne Cunningham, Head of Laboratory Research, Sydney Children’s Hospital will lead interested parties on a tour of the Westfield Laboratories at Sydney Children’s Hospital.

Registrations are necessary! Tour will only go ahead if sufficient numbers reached.

Registrations close Monday 10th November 2014.

To register, contact Samantha McFedries, Research Coordinators.mcfedries@unsw.edu.au | 9382 3038

Interested parties can still register to tour the laboratory.

Please register with Samantha McFedries, Research Coordinator s.mcfedries@unsw.edu.au | 9382 3038

Professor Cunningham will contact those who have registered on Monday 17th November to arrange tours, as needed.

POSTPONED

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UNSW PAEDIATRIC RESEARCH SHOWCASE2nd Annual UNSW Paediatrics Research Week

John Beveridge Lecture Theatre Foyer | Level 1 | Sydney Children’s HospitalFriday 14th November | 9am-4pm

Keynote Speaker: Prof John MattickExecutive Director, Lab Head - RNA Biology and PlasticitySenior Principal Research FellowThe Garvan Institute of Medical Research

Ì Clinicopath Conference (CPC) as per regular scheduling: 1pm-2pm | John Beveridge Lecture Theatre

Ì Announcement: ILP Awards Winners 2014 Margaret Dance Honours Prize 2013 2:05pm | John Beveridge Lecture Theatre

The School of Women’s & Children’s Health encourages all to attend the 2nd Annual UNSW Paediatric Research Showcase on Friday 14th November 2014.

The Showcase is being held in the John Beveridge Lecture Theatre, at Sydney Children’s Hospital and features a number of researchers at varying stages of their career, improving health outcomes for children - from infants through to adolescents.

The Showcase is designed to encourage, stimulate, and inspire paediatric research at UNSW, the Randwick Hospitals Campus, and associated Medical Research Institutes.

PROGRAMME:

9:00 AM Opening Address: Professor Terry CampbellSenior Associate Dean, UNSW Medicine; Professor of Medicine, St Vincent’s Clinical School, UNSW Medicine; Convenor, The Health-Science Alliance.

9:15 AM Keynote Address: Professor John MattickExecutive Director; Lab Head - RNA Biology and Plasticity, The Garvan Institute of Medical Research Transforming the diagnosis, understanding and treatment of paediatric disease through genomics.

SESSION 1 : CHAIR - PROFESSOR ADAM JAFFE

9:45 AM Accepted Abstract: Dr Claire Wakefield: Quality of life in grandparents of children with, and without, cancer.

10:00 AM Accepted Abstract: Dr Sue Woolfenden: Equitable Access to Developmental Surveillance and Early Intervention - Understanding the Barriers for Children from Culturally and Linguistically Diverse (CALD) Backgrounds.

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10:15 AM Accepted Abstract: Ms Ursula Sansom-Daly: Harnessing e-health to promote resilience in adolescent and young adult cancer survivors.

10:30 AM Accepted Abstract: Dr Santuri Rungan: Child development and settlement: A longitudinal study of refugee children.

10:45 AM Invited Speaker: Dr Meredith Ward Vascular endothelial growth factor receptor 3 expression in normal and hypoxic developing brain and retina.

11:00 AM MORNING TEA

SESSION 2: CHAIR - PROFESSOR RICHARD LOCK

11:15 AM Accepted Abstract: Dr Paul Gray Next Generation Sequencing for diagnosis and discovery of single gene immune diseases: Preliminary report of the CIRCA collaboration.

11:30 AM Invited Speaker: Dr Antoinette Anazodo: Fertility Understanding Through Registry and Evaluation (FUTuRE Fertility)

11:45 AM Invited Speaker: Dr Nadine Kasparian Risk, Resilience, and Relationships in Paediatrics: A Model of Care for Children with Life-Threatening Cardiac Arrhythmias and their Families.

12:00 PM Accepted Abstract: Dr Lisa Ewans The success of whole exome sequencing diagnosis in a large cohort of patients with Mendelian disorders.

12:15 PM Accepted Abstract: Ms Christina Signorelli The impact of long term follow-up care on dental awareness and practices in childhood cancer survivors.

12:30 PM Invited Speaker: Dr David Ziegler Novel therapies for the most aggressive cancer of childhood.

12:45 PM LUNCH

1:00 PM CLINICOPATH CONFERENCE (CPC)

2:05 PM ANNOUNCEMENT OF ILP AWARD WINNERS & THE MARGARET DANCE PRIZE FOR HONOURS

SESSION 3 : CHAIR - PROFESSOR WILLIAM LEDGER

2:15 PM Accepted Abstract: Dr Kristen Neville Appearance of Vitamin D abnormalities in older survivors of childhood cancer.

2:30 PM Invited Speaker: A/Prof Maria Craig Enterovirus infection and type 1 diabetes – more than a chance association

2:45 PM Accepted Abstract: Ms Jeyran Shabazi: Highly synergistic combination therapy of the BET bromodomain inhibitor JQ1 and the histone deacetylase inhibitor Panobinostat against neuroblastoma.

3:00 PM Accepted Abstract: Mr Sohaib Virk Impact of glycaemic variability on complications risk in young people with type 1 diabetes.

3:15 PM Invited Speaker: Dr John Lawson Adventures with Clinical Trials in Tuberous Sclerosis.

3:30 PM Accepted Abstract: Dr Laverne Lok Mental Health Needs of Children in Out-of-Home-Care.

3:45 PM Accepted Abstract: Ms Swaranjali Jain Characterising severity and assessing responsiveness to change of the epidermolysis bullosa dis-ease activity and scarring index.

4:00 PM Closing Address: Professor Bill Ledger Head of School, School of Women’s & Children’s Health, UNSW Medicine

4:10 PM AFTERNOON TEA

Discipline of Paediatrics, School of Women’s & Children’s Health, UNSW Medicine | Sydney Children’s Hospital, High Street, Randwick, NSW 2031 | CRICOS Provider Code 00098G | ABN 57 195 873 179

s.mcfedries@unsw.edu.au