Participants

I have haemophilia B which is a blood clotting disorder. Both my brother and I weren’t allowed to play any sort of impact sport as children and my brother actually passed away with issues from haemophilia.

When I was at The Alfred Hospital in Melbourne speaking to my doctors, they mentioned there was a clinical trial about to start at Royal Prince Alfred in Sydney. I thought it may not help me but it may help others.

When I was a young trainee, my mentor sat down and said to me the one thing you need
to remember is that things are going to change on a regular basis.

People are going to ask some questions about things that a GP doesn’t necessarily know much about yet. As an individual we simply cannot be across it all. 

I joined the Endia study with my daughter Leila.

The research is trying to find any environmental factors that trigger type one diabetes in young kids. I have type one diabetes and I have had it since I was four years old. Obviously my daughter has a higher chance of developing diabetes. This study could see early on if she’s going to develop type diabetes.

Healthcare in Australia has improved dramatically over these past decades because of the clinical trials we’re conducting.

The research we do is about trying to optimise patient comfort before and after an operation. By having research as part of the patient care experience, we are not just providing what we see as the very best healthcare here and now, we are also asking questions about how we can improve it further.

On Valentine’s Day last year, I had a significant stroke. I was taken to hospital, where the staff assessed me and found just how serious the stroke had been.

They said that I would be a suitable candidate to join a clinical trial. They explained in very careful detail exactly what I would be required to do. We were able to ask any questions that came to mind and we were given frank answers without any attempt to hide the truth.

Jarryd Roughead, Captain of Hawthorn Football Club. Ambassador of Helping our Health campaign.   

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.

My mother was a breast cancer survivor for 26 years. It was discovered that she carried the BRCA genetic variation. In women, the gene increases the risk of breast and ovarian cancer. In men, it increases the risk of breast and prostate cancer. When Mum was identified with the variation the familial cancer clinic contacted our family to alert us that we may have an increased risk of cancer.We found that the gene had been passed down through her family, including to my brother and myself.My brother and I joined the clinical trial partly as a tribute to Mum.

I joined a clinical trial because I was referred by my specialist. My cancer — melanoma — had metastasised and spread to my lymph glands, and my doctor thought a clinical trial was the best next step in treatment for me. I had already had radiotherapy, and chemotherapy offered little chance of success for my type of cancer. My specialist knew about this drug trial and recommended I go and talk to the team at Prince of Wales Hospital.The trial had a very strict protocol for participants. I went through a range of tests, including CT, MRI, heart echo and PET scans.

Tom McNamara thinks he was about eight when he was sunburned. “In my younger days my mother would take us to Bronte Beach to see the family. It’s taken all these years for my melanoma to show up.”Now 75, the former radiographer at Royal Prince Alfred Hospital in Sydney was told last year he had secondary cancer in his lung, with another tumour on his liver.  In Australia, 30 people a day are diagnosed with melanoma, and 1,200 die each year.“Basically I was devastated. Having been a radiographer, I knew what to expect.