August 2024

I’m very pleased to announce that we have developed a fantastic WCHN Research Week program for 2024, with the theme “It begins with research” which emphasises the first 1,000 days of life. Research Week will commence with a Research Community Day on Wednesday, 6 November at the Women’s and Children’s Hospital (WCH) followed by a two-day Research Symposium on 7 and 8 November at the Adelaide Convention Centre. As well as an opening by the SA Minister for Health and Wellbeing, we have two interstate speakers to set the scene for what will be a jam-packed two-days. Stay tuned – registrations will open in early September via: https://www.wchn.sa.gov.au/research/wchn-research-week.

We are very grateful to those who have agreed to present their research, from trainees and PhD candidates through to senior researchers, along with those who are participating in panel discussions and research competitions throughout the three days. Anyone who has presented a poster in the past 12 months is encouraged to include it in the “Sip and Show” poster session on Thursday, 7 November from 4.30pm-5.30pm.

The Women’s and Children’s Research Centre is growing and available for all your research needs and support, and particularly for people just starting out in research. Since November 2022, we have appointed a Research Liaison Manager (Kate Chadwick), a Senior Biostatistician (Dr Jennie Louise) and an AI Director (Dr Melissa McCradden). Every second Tuesday, Research Development Officer, Dr Thomas Kontou from the University of Adelaide joins us to provide early development support to researchers for their grant applications, and Professor Jenny Fereday from UniSA joins us every second Wednesday.

In July, Louise Goodchild joined us as Senior Clinical Research Nurse to support clinical trial research growth across the WCHN, and mentor and provide training for research nursing/midwifery staff at WCHN. You can read more about her role later in this newsletter. The Women’s and Children’s Research Centre is on level 7 of the Clarence Rieger building and we can be contacted individually or via health.womenandchildrenresearchcentre@sa.gov.au

We were very pleased to receive 20 Expressions of Interest for the SPARK Research Seed Funding Program. Funded in 2024 by The Hospital Research Foundation, the aim of these grants is to support innovative projects led by early and mid-career researchers, where seed funding is required to progress ideas towards larger scale funding opportunities. The successful grant recipients will be announced during the WCHN Research Week Symposium on Friday, 8 November 2024.

Don’t forget the Visiting Academic Program, where we can provide support for travel and accommodation for visiting academics to develop and foster collaborations and enhance the reputation and visibility of the Women’s and Children’s Health Network. This Program is supported by the Women’s & Children’s Hospital Foundation. 

I hope you enjoy this edition of Research News as we head towards a very busy research season!

Present a poster at Research Week 

Have you presented a research poster at a conference in 2023 or 2024? Would you like to share your research with other members of the WCHN research community? 

The 2024 WCHN Research Symposium is having a “Sip and Show” poster session where researchers can present their research to other symposium attendees over drinks. We’d particularly like to encourage higher degree by research students, trainees, and early career researchers to take part. 

• Date: Thursday, 7 November 2024
• Event: WCHN Research Symposium 
• Venue: Riverbank Rooms 6 and 7, Adelaide Convention Centre 
• Session: Sip and Show: Drinks and Posters 
• Session time: 4.30pm - 5.30pm 

No abstract is required. Please submit your name, WCHN department and poster title to Health.WCHNResearchEvents@sa.gov.au by COB Friday, 12 September 2024.  

Research Training Seminar Series 

All WCHN staff involved, or interested, in research are invited to attend the Women's and Children's Research Centre's monthly seminars. Visit the WCHN Research Events page for more information and recordings of previous seminars.

Upcoming seminars

• Thursday, 5 September 2024
  Aboriginal research at WCHN: working in partnership for meaningful gains in Aboriginal health (Cathy Leane, Manager Strategic Partnerships, Aboriginal Health Division).
• Thursday, 19 September 2024
  How to engage with consumers in research (Di Smith McCue, Director Consumer and Community Engagement, and Tim Braund, registered consumer advocate and Dr Mark McMillan, researcher).

For research training and funding opportunities, please visit the WCHN website: 

• Research training
• Research funding

My role is to support, mentor and provide training for research nursing/midwifery staff in the hospital, either those already in current research positions or who are interested in getting involved in clinical research, so that we can build our research capacity, particularly for clinical trials. Some of my activities include:

• Identifying and bringing research staff together to understand what is required to strengthen our research capacity to improve patient care and better patient outcomes. We will identify facilitators and barriers for successful research trials.
• Developing a register of current research staff to better support researchers commencing new projects and provide more opportunities for ongoing contracts for those pursuing a research career, as well as opportunities to work in new areas of research.
• Providing education and training opportunities to already established and new research staff and encourage participation in the advancement of the profession through knowledge development, evaluation, and application to practice according to the ANA Code of Ethics Provision 7.

Contact details: Louise.Goodchild@sa.gov.au; 8161 9782

Update from the Chair of the WCHN HREC and WCHN Governance Officer

Accessing and using patient information for research purposes
 
The Women’s and Children’s Health Network prides itself on maintaining trust with its consumers. A key aspect to maintaining trust is our commitment to safeguarding our consumers’ personal information and complying with requirements around privacy and confidentiality. Our obligations in regard to privacy and confidentiality apply both within the context of the clinical care provided and in any research or audit activities. 
 
Personal information means information or an opinion about an identified individual, or an individual who is reasonably identifiable:

1. Whether the information or opinion is true or not; and
2. Whether the information or opinion is recorded in a material form or not (Privacy Act 1988).

Access to personal information, either identifiable or de-identified, for research purposes requires:

• Written approval from a NHMRC certified Human Research Ethics Committee (HREC) (typically the Women and Children’s (WCHN) HREC as the lead paediatric HREC within the state) and written authorisation from the WCHN Research Governance Officer (RGO).

Access to personal information, either identifiable or de-identified, for research audit purposes requires:

• Written approval from the WCHN HREC.

As a general principle, the WCHN HREC and WCHN RGO does not give approval for non-WCHN persons to access identifiable patient/consumer information without consent for any part of a research audit or research study. This relates to all aspects of the research audit or study - accessing personal information for the purposes of de-identifying the data/information for subsequent use/analysis, use of the data/information, etc.
 
For anyone, either WCHN staff or other, to access personal information for the purposes of research or research audit without consent, a waiver of consent must be approved and authorised by a HREC as described above and the WCHN RGO for research studies.
 
In keeping with the key guideline that governs review of research in Australia, The National Statement on Ethical Conduct in Human Research (National Statement), only a HREC may grant a waiver of consent to access/use personal information in medical research, or personal health information (National Statement, 2.3.9).
 
The conditions of a waiver are set out at 2.3.10 of the National Statement as per the below.

1. Involvement in the research carries no more than low risk to participants (see Chapter 2.1). 
2. The benefits from the research justify any risks of harm associated with not seeking consent.
3. It is impracticable to obtain consent (for example, due to the quantity, age or accessibility of records).
4. There is no known or likely reason for thinking that participants would not have consented if they had been asked.
5. There is sufficient protection of their privacy. 
6. There is an adequate plan to protect the confidentiality of data. 
7. In case the results have significance for the participants’ welfare there is, where practicable, a plan for making information arising from the research available to them (for example, via a disease-specific website or regional news media). 
8. The possibility of commercial exploitation of derivatives of the data or tissue will not deprive the participants of any financial benefits to which they would be entitled. 
9. The waiver is not prohibited by State, federal, or international law. 

For any questions or clarification regarding privacy obligations within the context of research or research audit please contact either,

• The Chair of the WCHN HREC: Tamara.Zutlevics@sa.gov.au
• The Research Information Officer: Jade.Jordan-Hall@sa.gov.au
   

2024 SA Science Awards Innovation Team of the Year finalist

Congratulations to Professor Chris Barnett, Head of the Paediatric and Reproductive Genetics Unit at the Women’s and Children’s Hospital, who has been named as a finalist in the Innovation Team of the Year category at the 2024 SA Science Awards.

This recognition is a testament to the groundbreaking work of the Genomic Autopsy Study, a collaborative effort with the laboratory team at SA Pathology and Uni SA led by Professor Hamish Scott. The Genomic Autopsy Study, a national research initiative based in Adelaide, aims to unravel the complex causes of pregnancy loss. By providing diagnostic testing with rapid turnaround times, the study seeks to offer families much-needed answers and reproductive options to prevent future occurrences. The awards will be announced on Friday, 8 November 2024.

Medical Research Future Fund and type 1 diabetes grant successes for Professor Simon Barry

Congratulations to Molecular Immunology Group Head Professor Simon Barry who has won grants from the Medical Research Future Fund (MRFF) and JDRF.

With the MRFF grant, valued at $997,056, Professor Barry will collaborate with SA Pathology to create and validate a clinically orderable test that will diagnose long-COVID/Post-Acute Sequelae of COVID-19 (PASC). With the $678,000 JDRF Breakthrough T1D grant, the team will use cutting-edge ‘omics’ methods on samples from the ENDIA Study to better understand how immune tolerance is lost during the development of type 1 diabetes (T1D).

In future, this type of information could help find therapies which may halt or reverse the immune- mediated destruction of insulin producing beta cells in T1D.

Precision-guided treatment improves outcomes for high-risk paediatric cancer

Dr Sophie Jessop from the Michael Rice Centre for Haematology and Oncology collaborated on an Australian trial led by the Children’s Cancer Institute at the University of New South Wales. The trial found that precision-guided treatment (PGT) leads to significantly improved outcomes in children with high-risk cancer. Involving over 100 scientists and clinicians across nine child cancer centres, the study followed for 18 months, 384 children with high-risk cancers who had a very low chance of cure. Published in Nature Medicine, the study found that children who took the new treatment had a two-year progression-free survival more than double that of those who received standard therapy.

Read about the research here: Precision-guided treatment in high-risk pediatric cancers

Researchers uncover genetic disorder that may affect thousands worldwide

Dr Jan Libelt from the Paediatric and Reproductive Genetics Unit, South Australian Clinical Genetics Service, was part of a global collaboration led by the University of Oxford that has discovered that mutations in a specific gene (RNU4-2) cause a neurodevelopmental disorder that leads to severe impairments in how the brain functions, impacting learning, behaviour, speech, and movement. About 60% of people with neurodevelopmental disorders remain undiagnosed after comprehensive genetic testing. Published in Nature, the findings offer the first step for the development of a treatment in the future.

Read about the research here: De novo variants in the RNU4-2 snRNA cause a frequent neurodevelopmental syndrome

New guidelines set to change the way clinicians diagnose type 1 diabetes

A team of 66 international type 1 diabetes (T1D) experts, including Professor Jennifer Couper from the Diabetes and Endocrinology Department, have co-authored a consensus document published in Diabetologia and Diabetes Care, that outlines the best methods and recommended frequency for monitoring the progression of T1D across pre-symptomatic stages, as well as the point at which insulin should be introduced. Evidence shows that identifying T1D while still early-stage or pre-symptomatic has significant health benefits, including preventing diabetic ketoacidosis and long-term health complications, and improved blood glucose control.

Read about the research here: Consensus Guidance for Monitoring Individuals With Islet Autoantibody–Positive Pre-Stage 3 Type 1 Diabetes

What attracted you to this area of research? 
I was drawn to this research by the concern that there's limited knowledge about the long-term effects of viral infections like COVID-19 and influenza on young people. While acute impacts are well-documented, the ongoing issues are less understood. I'm particularly interested in how vaccination can play a role in preventing these long-term health complications in children and teenagers.

How are you researching this? 
Children with respiratory infections will be invited to participate in a longitudinal study from WCH and SA Health Notifications. After providing consent, the participants (or their parents) will be asked to complete surveys at the start, then 3, 6, and 12 months after a viral respiratory infection. This will allow us to monitor health issues that continue over time.

What real life impact are you hoping the research will have? 
The results of this research are expected to provide important information that may guide decisions about how to care for young people who experience health problems after respiratory infections. The study will also examine how these ongoing health issues affect school and if some children are more at risk of having longer-term problems.

What has been your biggest research highlight? 
Working on the B Part of It study team during my PhD has been the highlight to date, with information derived from the study helping to inform meningococcal B vaccination programs both locally and internationally.

In 1 sentence, what is your ultimate dream for your research? 
I hope that my research will make a meaningful contribution to the field of preventive health by influencing vaccine policy and enabling proactive management of infectious diseases.

If you would like to be featured as a researcher in the Research News, please email health.womenandchildrenresearchcentre@sa.gov.au

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