Endometriosis affects 1 in 10 women, although that figure is estimated to be higher than reported. It is also the most aggressive benign and debilitating disease facing Australian women of reproductive age today. Endometriosis happens when tissue similar to the lining of the uterus grows outside of the uterus.
Enter the National Endometriosis Clinical and Scientific Trials (NECST) Network; a clinical trial network administered and run by Jean Hailes for Women’s Health. The network was established to assist women, clinicians and researchers in Australia to connect for endometriosis trials.
The group has recently submitted an ethics application for the registry. The NECST Registry aims to collect data on quality of life impact, management/treatment strategies, methods of detection
(ultrasound or MRI) of patients with suspected or confirmed endometriosis. While they are aware there may be a delay in in patient recruitment as a result of COVID-19. However, Dr Cecilia Ng, Clinical Trials Network Manager, is confident that the network has been optimised to operate under current conditions once trials begin.
The network is still in its infancy, so they do not have any clinical trials underway yet. However, the team behind NECST are working hard to ensure their network is built to withstand anything, including a pandemic.
Digital platforms
Digital platforms were always part of the whole NECST process— the team wanted the registry to be a cloud-based, online, digital system so that clinicians anywhere in Australia can access it..
“We wanted to have a similar system to hospitals so that we could effectively perform data linkage studies in the future with the private and public health system. And also knowing that the clinicians are so time-poor, we wanted a system that was relatively easy to use,” said Dr Ng.
The data is in one place and patients can take it to another clinician so that they don’t then need to re-enter that information or provide a hard copy to their new clinician if they are not yet part of the NECST Network.
“We know there are so many duplications of data, like demographics, age, date of birth – so this was a way to centralise that,” said Dr Ng.
“We’re also planning to run clinical trials that will demonstrate the abilities of the network and the registry coming together.”
Where does ACTA fit into the equation?
When asked about the motivation behind creating online systems, Dr Ng said that ACTA helped to inform and facilitate the network’s systems.
“I’d spoken to a lot of people about registries when I first started, so the team at ACTA was really helpful in actually putting me in contact with a lot of other CTNs and registries. They were able to put me in contact with a lot of people who were able to give me advice.
“I have been to a lot of the ACTA seminars about registries and e-consent and was informed about how to move towards that direction. So it was always part of that original consideration for the network.”