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National Community and Consumer Involvement Committee Update

National committee members are a really important part of our research projects. Find out what they have been working on.

SEED FUNDING PROJECTS

Recently, the last round of Centre SEED Fund recipients attended a Community and Consumer Involvement Committee meeting where they took part in a speed pitch, presenting a rapid fire overview of their SEED project.  More information about these projects can be found below.

Recipients then opened the floor to committee members who were able to ask questions and provide feedback to the researchers.  These comments inform how the project moves forward and identifies any opportunity for change to ensure research outcomes will benefit the T1D community.

Multi-omics analysis to identify early markers of B-Cell loss 

- Dr Mugdha Joglekar: School of Medicine, Western Sydney University

Recent TrialNet studies demonstrated that immune modulation with Teplizumab in individuals at risk of type 1 diabetes (T1D) delays the onset, while its use in individuals with recent onset T1D preserves β-cell function. With these promising outcomes, it is timely and crucial to identify individuals at high-risk of developing T1D through enhancing the discovery and validation of newer dynamic biomarkers.

The loss of insulin-producing β-cells in the pancreas begins years before the diagnosis of T1D. Early and accurate identification of β-cell loss can provide a window of opportunity to preserve β-cells with the new/emerging treatments. Existing clinical tests do not offer the predictive power to accurately identify progression to T1D as most tests assess molecules (auto-antibodies, glucose) that are consequence of already activated immune system and major β-cell loss. It is therefore essential to discover and validate earlier markers of T1D.

We will address this important research gap through the use of multi-omics technologies that capture several dimensions of islet cell loss. Since a large portion of transplanted islets are lost within hours post-transplant, we will capture multi-omics profile of β-cell death from this setting. We will then use our established machine-learning workflows, to identify key biomarkers that are significantly associated with β-cell loss and validate these in plasma samples from separate cohort of recent-onset T1D children.

Establishing a set of multi-omics biomarkers would enhance early risk-stratification of T1D and a means to monitor its progression, response to strategies, such as vaccines and drugs designed to protect β-cell mass. 

Talking about type 1 diabetes: Understanding adolescents’ needs to have confident conversations

– Dr Keely Bebbington: The Kids Research Institute Australia

Health-related stigma negatively impacts adolescents living with type 1 diabetes (T1D). In our recent study of adolescents with T1D, 98.7% of participants reported that they experienced diabetes-related stigma (1). Not surprisingly, roughly half of the sample reported that they hid their diabetes and 60% reported that they felt self-conscious about engaging in diabetes-related management tasks. Of particular concern is that adolescents who reported higher levels of diabetes stigma were more likely to have higher HbA1c levels, increasing their risk of long-term health complications.

An international consensus statement on recommendations for ending diabetes-related stigma released this month highlighted an urgent need to support people living with diabetes with strategies to talk with others about their condition (2). To be engaging and effective, this guidance must be informed by lived experience; however, a thorough understanding of the experience of stigma, disclosure, and concealment for adolescents with T1D does not currently exist.

In this project, we aim to understand the concerns, experiences, and support needs of adolescents with T1D in disclosing their diabetes diagnosis and regimen to others. To do this, we will interview adolescents with T1D so that we can thoroughly understand their lived experience. As we plan to use this research to build on a future research and intervention plan to help support improved health and better psychological wellbeing for young people living with diabetes, the outcomes of this project will enable us to develop guidance that is based on and respects their daily experiences of living with T1D. 

Investigating the urinary proteome as a source of risk-associated biomarkers of early childhood islet autoimmunity 

– Dr Megan Penno: The University of Adelaide

Urine has served as a diagnostic fluid for type 1 diabetes for over 2500 years. One of the first tests for diabetes, developed in ancient India, was whether a person’s urine attracted ants – a sign of high sugar levels! While blood glucose testing has replaced urine glucose testing (and technologies such as Continuous Glucose Monitors have replaced ants), there may still be a lot we can learn from urine about how and why type 1 diabetes develops.

The proteins found in the urine mirror the health of the various organs and systems in the body. Alterations in protein expression may reflect physical and/or pathological changes that are occurring. Pregnancy tests, for example, detect a protein called hGC in urine. Diagnostic tests using urine are very useful as urine collection is non-invasive and can be done at home. This makes urine testing especially advantageous for children.

In this project, we propose to analyse all the urinary proteins, referred to as the urine “proteome”, of the children in the ENDIA Nested Case-Control (NCC) study at the time of seroconversion. Our hypothesis is that the children who developed islet autoimmunity will have detectible changes in their urine proteomes at the time the islet autoantibodies appeared. If this is true, in the future we’d like to examine all the urine samples collected from the children since birth to see how early the changes can be found. This may identify new early stage biomarkers of individuals at high risk of type 1 diabetes development.

Next round of SEED Funding is now available. If you are an early to mid-career researcher with an interest in type 1 diabetes research, we encourage you to apply.

T1D Resources Scoping Project
The committee also had the opportunity in July to contribute to a project where the Centre is trying to understand what resources are available to families and individuals living with T1D that support them in the management of their condition.

Research Assistant, Peter Delaney, sought feedback from the committee on:

1.      Where they access information if they need something?

2.      Where they like to look for information?

3.      What are the major gaps, if any, in the resources and places they like to look for information?

4.      Is there anything else the Centre should consider when searching for resources? And

5.      What would they like out of the project?

There was an overwhelming response of being able to find information in one place, the need for quality, reliable sources and knowing what information is accurate and backed by research.

Once completed, a database will be created to help identify what resources don’t already exist and the opportunities for the Centre to develop those resources to help the T1D community. It will also inform future research projects that close the knowledge and information gap. 

These resources, in the future, will be available for families to access through the new DiabHQ Patient Portal currently in development.