Simon, Ted and Matthew Frost, diabetes trial participants, Diabetes Vaccine Development Centre

My name is Simon Frost and I have had Type 1 diabetes for more than 25 years and as the parent of two boys (Ted and Matthew) eligible to be screened to establish if they were at higher risk of developing Type 1 diabetes, I found deciding that they could be part of a clinical trial was an easy choice to make. Encouraging my boys to participate was not only about their own health, but the potential to make a contribution to the worldwide search for a cure to this chronic disease.

The primary aim of the Intranasal Insulin Trial we are involved in is to determine if Type 1 diabetes can be prevented. Participants need to be at high risk of developing Type 1 diabetes. This is determined by the free screening blood test for antibodies. The boys have completed the blood test which was simple and very straightforward. Once you have registered online at www.stopdiabetes.com.au, you attend a local pathology centre for a free test.

I was fortunate to have had some exposure to the Diabetes Vaccine Development Centre and the trial’s principal investigators, Professors Len Harrison and Peter Colman, who provided me with reassurance about what was required to be involved. The trial has a level of intimacy between clinicians and participants — the passion of the people involved is quite remarkable.

Currently we have only had the boys tested and are awaiting their results. If they qualify for the treatment phase of the trial they will use a nasal vaccine spray once a week for a year and then attend follow-up appointments at a trial centre once every six months for a further four years.

It’s a small intrusion that may make a difference to their lives and potentially many others in Australia and around the world.

For this diabetes trial, the trial has reached a critical point. It needs 120 participants and is currently a bit over halfway there. There is an urgent need to recruit more participants.

For anyone thinking about being in a clinical trial I would say there is only so much that medical research can achieve through lab tests. Clinical trials in Australia are subject to forensic evaluation by ethics committees and regulatory bodies. Participating in a trial is a crucial part of the ‘jigsaw’ to achieve prevention or cure. It could also make a difference to your own health and wellbeing.

The trial is being funded by the National Health and Medical Research Council of Australia (NHMRC) and the Juvenile Diabetes Research Foundation (JDRF), though the Diabetes Vaccine Development Centre (DVDC) and insulin is being donated by Novo-Nordisk. For further information visit www.stopdiabetes.com.au