Clinical Trials Summary (10)

1. Australia and New Zealand College of Anaesthetists Foundation (2)

Dr. David Sommerfield: In-depth exploration of children’s pain experience.

Dr. David Sommerfield: In-depth exploration of children’s anxiety experience in the perioperative setting.

2. Child and Adolescent Health Service (4)

Telethon Fellow: Dr Chandra Rath, investigating whether increasing probiotic supplementation in preterm babies will enhance their gut health, delivered at KEMH.

Telethon Clinical Research Centre: Dr. Michael O’Sullivan, world-first trial comparing different doses of OIT in preschool children with multiple nut allergies.

Telethon Fellow: Dr David Cullingford, study of a cohort with septo-optic dysplasia (SOD) - discovering the triggers of a rare and debilitating congenital condition, septo-optic dysplasia.

Telethon Fellow: Dr David Cullingford, first WA cohort of Gastroschisis.

3. Children’s Cancer Institute (1)

Associate Professor Jamie Fletcher: Precision medicine for childhood cancer.

4. Lions Eye Institute (2)

Dr. Fred Chen: Personalised medicine for retinal disease.

Dr. Jessica Mountford: Recruitment of children with myopia for genetic GWAS screening.

5. University of Western Australia (The Raine Study) (1)

Associate Professor Rebecca Glauert: Recruiting Generation3 of the Raine Study.

Clinical Standards of Care Summary (7)

Child and Adolescent Health Service (3)

Telethon Fellow: Dr Kate Lomax, improving management of type 1 diabetes in very young children and building a compelling case for a new model of care in T1D.

Establishment of a Nurse practitioner for Familial hypercholesterolaemia (FH) - changes to standards of care through a genetic cascade testing program for FH integrated between a Nurse Practitioner-led model in collaboration with general practice to identify children with FH in WA to improve treatment and care.

Integration of Hybrid Closed-Loop Insulin Pump Systems ‘artificial pancreases’ for children with T1D.

Fiona Stanley Hospital, South Metropolitan Health Service (2)

Implementation of Fiona Stanley Hospital Immunology Clinic.  

Implementation of Paediatric Hearing Registry: Advancing Hearing Care in Western Australia.

Little Big Steps and Child and Adolescent Health Service (1)

Integration of physiotherapy interventions for children diagnosed with Acute Lymphoblastic Leukaemia. This Pilot provided evidence for implementation of intervention for all cancer patients across PCH.

WA Firsts (17)

Australia and New Zealand College of Anaesthetists Foundation (1)

WA First: Development of a new child-focussed paediatric clinical assessment digital tool designed for assessment of children’s pain and anxiety.

Allergy Support Hub (1)

WA First: ASH Free to play, grow, connect providing free, on-the-ground support for families living with allergic conditions.

Child and Adolescent Health Service (3)

WA First: Telethon Fellow: Dr David Cullingford, first WA cohort of Gastroschisis.

WA First: Installation and integration of Artic Sun system at King Edward Memorial Hospital.

WA First: Establishment of a Nurse practitioner for Familial hypercholesterolaemia.

Children’s Cancer Institute (2)

WA first: Installation of advanced single cell equipment and workflows specifically designed to enable clinically relevant analysis of the cells in the CSF of brain cancer patients.

WA first: Creation of an osteosarcoma preclinical model from a WA child.

Curtin University (3)

WA First: Prof. Kevin Batty first to comprehensively investigate IV compatibility of these two drugs against a large panel of secondary drugs.

WA First: Prof. Kevin Batty investigate the IV compatibility of both morphine sulphate (as planned) and morphine hydrochloride against the secondary drugs.

WA First: Prof. Kevin Batty demonstrate the compatibility of alprostadil and dexmedetomidine with commonly used sterilising and in-line filters, which are important to prevent the administration of particles (e.g., precipitated drug) to vulnerable babies.

Down Syndrome WA (1)

WA First: Custom designed camp and community connect for teenagers with a diagnosis of Down Syndrome.

Edith Cowan University (1)

WA First: Acquisition and implementation of a PhenoCylcer-Fusion System – allowing the fastest spatial biology solution to phenotyping of whole slides.

Lionheart Camp for Kids (1)

WA First: Evidence-based, intensive grief support service that provides wrap-around support services for children aged 5-17 years and their families, following the death of an immediate family member.

Lions Eye Institute (1)

WA First: Establishing a biobank of DNA from local Western Australian children suffering with myopia for research studies.

Pregnancy to Parenthood (1)

WA First: First free perinatal and infant mental clinical health service in regional WA.

Superyou Therapy (1)

WA First: Acquisition and availability of a Grid Pad 13 with Lumin-i for WA residents.

Type 1 Diabetes Family Centre (1)

WA First: First no-cost access HbA1c blood testing for children with Type 1 diabetes.

Australia Firsts (10)

Allergy Support Hub (1)

Australia Frist: The ASH Allergy Brave Program is a first-of-its-kind initiative in WA and Australia dedicated to providing psychological counselling for children with chronic allergies.

Child and Adolescent Health Service (1)

Australia First: Telethon Fellow: Dr David Cullingford, study of a cohort with septo-optic dysplasia (SOD) - discovering the triggers of a rare and debilitating congenital condition, septo-optic dysplasia.

Curtin University (4)

Australia First: The first two on-country Our World in Photos exhibitions by child photographers.

Australia First: The first permanent Our World in Photos exhibition in Australia.

Australia First: The first well-being learning resources co-created with Bardi Jawi children in Australia.

Australia First: The first school well-being resources developed as a Our World in Photos output in Australia.

Harry Perkins Institute of Medical Research (1)

Australia First: Identification of liver progenitor stems cells in the liver of CF children with a liver disease comorbidity with identified biomarker.

The Kids Research Institute (1)

Australia First: First young people co-designed intervention program to also address the psychological trauma from a burn injury.

The Healthy Strides Foundation (1)

Australian first - The first learning health care system in the field of neurodisabiltiies in relation to treatment and intervention dosages.

WA All Abilities Football Association (Starkick) (1)

Australia First: Kids with disabilities playing footy halftime takeover on national television.

World Firsts (5)

Child and Adolescent Health Service (1)

World first: Telethon Clinical Research Centre: Dr. Michael O'Sullivan trial comparing different doses of OIT in preschool children with multiple nut allergies

Lions Eye Institute (3)

World First: Use of sirolimus to treat choroidal haemangioma in patients with Sturge-Weber syndrome.

World First: Largest case series of PRPH2-related retinopathy to examine the variability in retinal phenotypes.

World First: Using OCT features to differentiate Stargardt disease from PRPH2-associated retinopathy.

Women and Infant Research Foundation (1)

World First: world-first application of pump-free ECMO in a fetus weighing less than 2kg.