Australians can help others by registering for clinical trials

Australians can help others by registering for clinical trials

Image source: Optometry Australia

Trials of new treatments for eye disease and eye conditions regularly take place in Australia and it’s now easier than ever for people to find out about them and possibly be included via two new registries.

Trials also sometimes compare existing and new therapies to see which is best for certain patients.

There are many therapies and treatments to help patients delay onset, slow progression of eye disease and limit damage and vision loss. These can help with conditions including myopia (short-sightedness), diabetic retinopathy, glaucoma, age related macular degeneration, cataract and keratonocus. Your optometrist can advise about these.

Before new therapies come on the market, drug companies, government authorities and health professionals need to know that they are safe, work properly and what combinations or doses are needed for various patients to provide the best outcome with the least side-effects.

Once initial trials have been done to test for safety and efficacy, more clinical trials are completed in people.

Two main ways people can find out about trials are through a registry in Melbourne and a federal government website.

The Centre for Eye Research Australia (CERA) at The Royal Victorian Eye and Ear Hospital in Melbourne

The CERA clinical trial registry is specific to eye trials and has established a website called web sight where people can register their details and interest in trials.

The registry compiles a database of Australian residents with certain eye diseases or conditions so that when a trial is about to start, researchers know who is interested in participating.

It states: “For those with an eye disease there is no guarantee that there will be a trial for you, but at least by having your name on our list, the possibility of finding you when we need you is far greater.”

Researchers behind the database also want to hear from people who think they have no eye disease but who are willing to take part in trials as ‘normal participants.’ These people would not receive an active treatment as participants with eye disease would, but information about their eyes may be used for comparison. They have about 80 ‘control’ patients registered.

People volunteering for the trials fill in details about themselves, their eye disease and their eye care professionals including optometrists and ophthalmologists. This way, researchers can help determine each person’s suitability for current and upcoming trials.

A huge influx of people inquiring about a study of laser treatment for early led AMD led to researchers setting up the registry.

More than 1,500 people are enrolled on the CERA registry. There was a big spike in registrants in March when CERA announced it was doing a world-first study to see if vitamin B3 could help slow glaucoma in people with the potentially blinding disease. Nearly 1,000 people have put their names down for glaucoma trials.

Nearly 400 are registered for AMD studies, about 230 for myopia trials and 78 for studies involving hyperopia or farsightedness. People have also registered their interest in studies for diabetic retinopathy, keratoconus, uveitis, and retinitis pigmentosa.

AMD patient Mrs Julie Dunn is considering taking part in a trial

 Julie, pictured left, from Venus Bay in Gippsland, Victoria, read a newspaper article about the CERA registry and registered her name and details and provided scans of her eyes from her optometrist a year ago. She is now considering taking part in a study of laser treatment for early age-related macular degeneration to try to slow progression of the disease.

Julie was diagnosed a year ago after her GP referred her to her optometrist for diagnosis.

“I have dry AMD and while there are treatments for wet AMD, there is no treatment for dry AMD. Researchers said this may help slow progression and may provide some help with night vision,” she said.

“The people at the Eye and Ear Hospital have been really helpful and have explained everything. I’m still deciding if I’ll go ahead but I probably will. My GP said the laser had been used overseas and my optometrist said the risk was low.”

The trial involves 100 bursts of laser in one sitting in her worst eye and follow-up checks three, six and 12 months later.

“If you can help yourself as well as someone else in the future how great would that be - it would be fantastic! Your eyes are the most important thing,” she said.

“The Eye and Ear did 3.5 hours testing of my eyes so even if I don’t progress further it was worth going in for that.”

Federal initiatives

Another way Australians can find out what trials are planned or are happening is by searching the Australian Clinical Trials website. The website is an initiative of the Australian Government’s National Health and Medical Research Council, the main body which funds medical research nationwide.

This website links to medical research trials underway or planned in Australia which are listed on the Australian and New Zealand Clinical Trials Registry. It includes trials taking place internationally that also have Australian sites.

People can search via diseases or disorders of the eye and in June 2018, for example, there were 87 trials involving the eye. They can further narrow it down to their specific eye condition or disease.

People can also look up studies about normal eye development and function on this website.

It provides a short summary about each trial as well as eligibility, inclusion criteria and age of participants. People can also register to receive alerts advising when new and relevant clinical trials are registered. Studies might compare different types of surgery or contact lenses or test new treatments.

Meanwhile Federal Health Minister Greg Hunt has announced a plan for Australia to be a global leader in clinical trials. 

“We are providing $7 million to support states and territories to redesign their trial systems to make it easier for researchers and companies to conduct clinical trials,” he said in a media release. “This will mean Australian patients will have greater access to the world’s best medical breakthroughs and will get first access to the best medicines, devices and treatments in the world.”

The Australian Government announced it would make it easier for researchers and companies to start up and run clinical trials by developing a new national one-stop-shop process. Working with state and territory governments, the government will reduce red tape and end duplication, making it easier to conduct clinical trials in Australia.

Image source: AFL Players

Coinciding with this, in May the government launched a national awareness campaign ‘Helping Our Health’ to get more Australians into ground-breaking clinical trials, opening up access to life-saving new medicines and treatments.

The campaign raises awareness of the value of clinical trials and sheds light on the faces of Australians whose lives have been changed or saved by trials.

Its ambassador is AFL champion footballer and Hawthorn Football Club captain Jarryd Roughead, pictured right, who made a successful comeback to football last year after time off for a highly publicised battle with melanoma.

In May 2016, Roughead received news that a melanoma on his lip – detected and removed in 2015 – had spread, and a biopsy confirmed four small spots on his lungs were cancerous.

Jarryd’s treating doctor, oncologist Professor Grant McArthur from Peter MacCallum Centre, suggested a new immunotherapy treatment that had just completed testing in clinical trials. Jarryd began treatment in June 2016 of the combination of immunotherapy drugs, Opdivo (nivolumab) and Yervoy (ipilimumab) and by November 2016 was declared cancer free.

The Australian Therapeutic Goods Association approved Opdivo after the clinical trials.

Through his health scare and treatment, Jarryd gained an understanding of the importance and benefits of clinical trials.

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