Doctors back new clinical trials registry


The Australian Medical Association (AMA) has welcomed a new register of clinical trials in Australia that should make it easier for patients to access trials and for researchers to recruit people.

Federal Health Minister Sussan Ley announced the new Australian Clinical Trials website today and said it would help boost patient participation in clinical trials but it is not a new initiative.

The Australia New Zealand Clinical Trials Registry (ANZCTR) was established in 2005 with $1.5 million in federal funding through a National Health and Medical Research Council (NHMRC) enabling grant. The NHMRC is also the same body behind the new clinical trials website.

There are already numerous other trial registries such as Clinical Trials Connect and some based overseas, such as US website, which covers trials in the US and other countries. Other registers target a particular illnesses, for example Australian Cancer Trials.

Despite the number of clinical trials websites already in existence, Vice President of the Australian Medical Association Dr Stephen Parnis said the Association was supportive of the new register.

“We acknowledge that clinical trials may not proceed from lack of appropriate participants and this initiative has the potential to increase awareness and participation, not just for members of the community, but also for both the scientific and medical professions as well,” Dr Parnis said.

Asked if the apparent duplication of the new Clinical Trials website with the ANZCTR would make any appreciable difference to the number of people participating in clinical trials in this country, Dr Parnis said there was room for both registers and there was often more than one way to access the trials.

“Give it a try and see whether they complement each other or ultimately become one source. It’s a step in the right direction,” he said.

Dr Parnis said an increasing number of people were researching their conditions and the treatments available online and the Australian Clinical Trials website would be an important resource to give people an idea of their options.

“Up to now people very much depended on advice from doctors, usually medical specialists, who would advise them about a particular trial. This opens it up a little bit so people can ask more informed questions,” Dr Parnis said.

He commended the new website for having an area for consumers and said it would also be a useful resource for GPs to let them know what trials were going on. There is also an e-learning module to better explain clinical trials.

He hoped the website would mean more clinical trials were better patronised.

“There are a million reason why trials don’t go ahead. Sometimes it’s the funding breaking down and sometimes they don’t get enough people. Australia has a relatively small population so that has implications, not just for this but for things like organ donation or bone marrow.”

While both websites allow patients to search for clinical trials according to illness, age, gender and recruitment status and provide contact details for researchers the new website looks better, is clearer and allows people to search for trials by state. However, it obviously only lists Australian trials, not those in other countries.

Other organisations who advocate for patients have also welcomed the initiative.

Paul Grogran, Director of Public Policy at Cancer Council Australia, said the launch of the new clinical trials website would be welcomed by many cancer patients and would enbable people interested in taking part in innovative research, who often had exhausted other avenues of treatment, a way of identifying relevant research projects.

“Clinical trials are the only way to definitely test what new cancer treatments work, however recruiting participants can be difficult. This new website is an important step forward for cancer research in Australia, helping connect scientists with patients who may potentially benefit for their ground-breaking research.”

The Director of Patient Advocate Pty Ltd Claire Crocker said it would make trials more accessible to patients.

“This initiative will make information about clinical trials much more available to patients and families who may otherwise not know how to access such avenues, especially for those experiencing chronic illness. It is extremely important that patients also receive, and are encouraged to receive, specific and personal medical advice to facilitate informed and safe decision making at all times,” Ms Crocker said.

The federal government hopes the registry will help to address the fact that just under half of all Phase Three clinical trials failed to meet their patient recruitment targets.

Ms Ley said recruitment difficulties were considered one of the main reasons for a seven per cent decline in the number of Australian trials conducted between 2012 and 2013.

“This Australian-first one-stop shop of information relating to clinical trials marks a significant milestone in the Australian Government’s $9.9 million commitment to accelerate clinical trials reform and improve access to critical treatments and therapies,” Ms Ley said.

She said participating in clinical trials offered patients access to new trial therapies and a source of hope at a time when they may have exhausted other avenues.

“This reform will provide Australians right across the country, including regional and rural patients, greater access to clinical trials and will help to improve health outcomes,” she said.

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