Richard Scolyer encouraged Australians to enrol in research. Here's how

In his open letter to all Australians, published after he died, renowned pathologist and melanoma researcher Richard Scolyer wrote of the pride he felt taking part in, and advocating for, clinical trials.

"To all cancer patients, I encourage you to consider enrolling in research and clinical trials, if on offer," he wrote.

"And to government and the wider community, please keep funding science and medical research. This is the most impactful way that you too can make a difference."

It's a sentiment echoed by Tom Valenta, who has signed up for three clinical trials in Australia since 2017 and wouldn't hesitate to sign up for a fourth.

Mr Valenta enrolled after being diagnosed with glaucoma, a common eye disease that started to rob him of his vision.

He wanted to help researchers understand the disease's progression, with the hope of one day being able to find a cure.

"I'm about to turn 80 and to have a sense of purpose at my age and stage is a really good thing," he said.

"The thought that I can, you know, help in this area is very, very rewarding for me."

How do clinical trials work?

Clinical trials help researchers try out new treatments, tests or procedures that may help to prevent, detect or diagnose, treat or manage diseases or conditions.

Many people enrol in drug trials because they have a condition, such as a rare cancer, with very few treatment options.

According to figures from the Australian Clinical Trials Alliance, about 1,850 new clinical trials are conducted in Australia every year.

Most take place in either Victoria or New South Wales, states with the largest populations and most developed clinical trial infrastructure, such as laboratories and teaching hospitals.

The Australian government has an online search tool you can use to find clinical trials near you.

Whether or not you know if you are taking an experimental treatment depends upon the type of clinical trial.

In some trials, called a double-blind trial and considered the "gold standard" of medical trials, neither the participants nor the researchers know who is getting the fake treatment and the real one.

While some participants are given the experimental drug, others are given a placebo — like a sugar pill — which has no active drug inside it.

This allows researchers to compare the group getting the new medication with the group getting the placebo to figure out if the drug works as expected.

But in other trials, known as open-label, both the participants and researchers know what treatment is given.

These trials are used if blinding is not possible or ethical, or to quickly test the safety and efficacy of treatments. They are often used in cancer research to test new therapies.

'Fairly simple' to be involved

Mr Valenta has been taking part in trials run through the Centre for Eye Research Australia (CERA) that test potential therapies for the early detection or treatment of glaucoma.

He said participating in the trials had been fairly simple with "no hardship involved", just a few extra eye checks a year and a commitment to using medications as directed.

These eye checks were longer than the standard appointment, he explained, and typically accompanied by a questionnaire about his vision.

Long before Mr Valenta participated in clinical trials for glaucoma, he supported his beloved wife, Marie, who died from Alzheimer's disease in 2009, when she was 61.

"While she was still [aware] we agreed we would do everything to promote the cause, so we did clinical trials and we did publicity," he said.

"Sadly, the progress in neurodegenerative diseases [research] is nothing like what it is in glaucoma and other conditions."

Some diseases receive more funding and are better researched than others.

Between 2023 and 2025, Australia was associated with 7,196 trials. The main priority area for trials during this time was cancer.

Most clinical trials in Australia are funded by commercial sponsors, including pharmaceutical companies, with businesses hoping to make money from selling the drug or device if it works as expected.

Other trials are funded by the government, not-for-profit organisations, or paid for with grant funding.

The federal government has recently committed $750 million over 10 years to test new treatments, primarily looking at research for rare cancers, rare diseases and unmet needs.

How does Australia compare to other nations?

Based on number of clinical trial registrations, Australia ranks 14th in the world.

About 90,000 Australians participated in clinical trials in 2022, a slight dip in the number of volunteers from 2019.

Dino Cercarelli, chief operating officer of the Australian Clinical Trials Alliance, said this decrease was likely due to the trend away from later-phase trials to the earlier ones.

There are four phases of clinical trials and the cost and length of each varies depending on factors such as the number of participants and trial sites.

Phase 1: Looks at the safety and dosage in a small group of about 20–100 participants

Phase 2: Tests the safety and efficacy in a larger group of around 100–500 people

Phase 3: Confirms the drug works as expected and looks for rarer side effects in a group of 1,000 participants or more

Phase 4: Monitors long-term effects and effectiveness as part of post-market surveillance

Mr Cercarelli said tax incentives for early stage research and development contributed to Australia's competitive edge in phase 1 trials.

"From a global perspective, we're strongest in the phase 1 space," Mr Cercarelli said.

But while the number of phase 1 trials in Australia were steadily growing, he said more advanced clinical trials were not experiencing the same growth rate, likely due to our small population.

"You don't need a large population for a phase 1 clinical trial, you could have as little as 10 or 15 patients, maybe 20 patients," he said.

"Once you start moving into phase 2, phase 3, the types of those trials require a different, higher number of participants.

"Australia's recruitment potential is a lot less than in your larger countries such as US, China, Japan."

Getting involved changes the future

The first study Mr Valenta took part in, led by CERA optometrist and research fellow Flora Hui, investigated potential early markers of glaucoma, in the hope to diagnose the condition earlier.

Researchers used this early diagnostic tool in the double-blind phase 1 trial Dr Hui ran next, where neither she nor the 57 participants knew who was getting B3 oral medication.

The study, which suggested B3 might help slow disease progression, is now being replicated overseas with a larger population to provide more data.

Mr Valenta is taking part in the ongoing phase 3 trial.

Dr Hui said without people like Mr Valenta willing to take part, there would be no research.

"Recruitment for clinical trials can be difficult," she said.

"People don't necessarily think about participating in medical research.

"And often, even when they do, it's not necessarily offered or they don't know how to access them."

Lyndell Lim, head of uveitis and retinal vascular disease research at CERA, said if a treatment proved useful, taking part in a clinical trial could be beneficial for those with few other options.

"When I first started in ophthalmology and research, 20 years ago, we had no treatments for things like age-related macular degeneration, which is the major cause of blindness in Australia," she said.

"And now we've got a treatment that keeps people driving."

Before his death at the age of 59, Professor Scolyer volunteered to undergo a world-first experimental treatment for brain cancer, hoping it would open the door to better treatment for other patients.

He was farewelled in a state memorial service this week.

"I have always been driven by the belief that we all have a responsibility to try to change the future for others and leave the world a better place," he wrote in his final letter to Australians.

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