By Jane Butler, Senior Principal Research Scientist Neuroscience Research Australia (NeuRA)
Despite the excitement surrounding some of the novel therapies currently being tested to improve function for people with spinal cord injury (SCI), one of the biggest challenges as a researcher is the recruitment of participants for our clinical trials. For each of our studies we need a prescribed number of people to take part and it is not always an easy task to reach our target.
There are many reasons why a person with SCI cannot join a clinical trial, despite being eligible and having an overwhelming desire to. The obvious one arises from having a reduced ability to move or no movement at all below their injury site, which can make transport to and from a trial site logistically challenging. It may not be widely known by those who are not familiar with the condition, however many people with SCI also live with highly compromised autonomic systems which means they have a lack of bladder and bowel control, temperature control, breathing difficulties and blood pressure and hypertension issues. Those who live in regional and rural areas, will need to temporarily relocate to live near a trial site. If this is the case, they will have highly specialised accommodation, care and travel needs that come with a high cost as well. For these reasons, mustering up the motivation and energy to commit to joining a trial is certainly no mean feat.
It is important to note that our trials are community driven and not sponsored by pharmaceutical companies like drug-based clinical trials, which most people would be more familiar with. This means that we are 100% reliant on the limited funding that we receive from SpinalCure Australia via the generosity of community donations and philanthropy, as well as funding that we receive from government grants. Another big difference between our trials and a drug trial (where a person typically takes a tablet at home each day) is that our volunteer participants need to receive face-to-face physical training three times a week for a period of 6 to 12 weeks. This makes time a major factor they will need to consider before taking part.
So, how can we improve the accessibility of clinical trials to increase the number of people who are able to and want to take part? Sometimes researchers can reimburse volunteers for their time and travel costs, but unfortunately this is often limited. More after-hours trial options would help people with day-time commitments to take part in studies. Home-based trials can be more flexible, but they are not always feasible.
For two of our current clinical trials, we have attempted to increase accessibility for people who wish to take part. We have set up satellite trial sites in collaboration with community-based NeuroMoves neurorehabilitation gyms in Sydney, Adelaide and Perth. We are still expanding the number of these sites, but they are still too far away from home for many. A great initiative by the NSW Government is the IPTAAS funding scheme that subsidises transport and accommodation costs for volunteers to take part in clinical trials. Currently it is only available for volunteers who live in NSW but outside of Sydney. Ideally, this type of funding should be expanded to include everyone with a SCI in Australia.
So, how can a clinical trial benefit you? As researchers, we cannot guarantee that anyone will benefit from our clinical trials. We need to do the study to discover if new treatments work. If successful, then they can be made available clinically as treatments for everyone with a SCI. Volunteering to be a part of a clinical trial can be a very positive experience. It gives people the opportunity to contribute to and engage with the very forefront of SCI research and to try new treatments that have the potential to help us reach our goal of finding a cure.
If you are interested in taking part in a SCI clinical trial, the first step is to find out what studies are available. SpinalCure has a list of projects they support https://www.spinalcure.org.au/research/sci-clinical-trials-australia or you can visit NeuRA’s Spinal Cord Injury Research Centre page https://neura.edu.au/research/research-expertise/spinal-cord-injury where you can join our no-obligation volunteer database to stay updated about potential volunteer opportunities.
If you would like to take part in one of our clinical trials or if you have any feedback or ideas about how we can get more people with SCI involved, we would love to hear from you. You can contact myself and other members of the Spinal Cord Injury Research Centre team at [email protected]