The National Endometriosis Clinical and Scientific Trials (NECST) Network is an initiative to bring together patients, researchers, scientists, and clinicians; to study endometriosis and related conditions and improve the lives of those with the condition.
It is funded by the Australian Government through the Medical Research Future Fund (MRFF) and administered by Jean Hailes for Women’s Health.
To be an integrated, collaborative, and connected national research community – supporting and driving research that improves patient outcomes for those living with endometriosis and its symptoms.
Our research network aims to develop a national research framework that supports and contributes to the evidence-based for optimised and personalised care and earlier detection of endometriosis.
Over the last three years, we have worked on several projects to form the network. These include:
The first significant outcome from the NECST Network was the study that determined how common endometriosis is in Australia.
Led by Prof Gita Mishra, a member of our Advisory Committee, and Dr Ingrid Rowlands from the University of Queensland, in partnership with the Australian Institute of Health and Welfare (AIHW) – 20 years of data from the Australian Longitudinal Study on Women’s Health (ALSWH) was analysed.
This showed that 1 in 9 women in Australia was diagnosed with endometriosis by age 40-44.
This is higher than previously reported, with very sound information taken over a long timeframe. Work from this study formed the basis of government reports showing around 34,200 endometriosis-related hospitalisations in 2016-2017.
Several other studies from these areas of research will be reported in the next few months.
Part of the goal in establishing the NECST Network in the National Action Plan for Endometriosis was to establish a clinical database to collect data and bring together endometriosis researchers across the nation.
The second part of this aim was to be a register that could allow interested individuals with endometriosis to participate in research.
A series of consultations and meetings were held. Including all the major Endometriosis Advocacy groups, clinicians, scientists, researchers, and administrators to develop a system to capture important information for now and the future in endometriosis care. The NECST Registry is the result of this work.
The NECST Registry is an online clinical database, only accessed by authorised users in the NECST Network. Its purpose is to collect and track the health and clinical data about the care and different treatments to manage endometriosis treatment. This initially includes information on imaging scans (such as ultrasound or MRI), medications used such as hormonal and non-hormonal treatments and surgical treatments for endometriosis.
Future data collection and study areas will consist of other aspects of care such as complementary and alternative medicines, allied health care (such as physiotherapy), and emerging treatments.
With this information, it is the hope that we can describe patterns of care following diagnosis of endometriosis and identify the variations in treatments and outcomes of patients with endometriosis and endometriosis-related symptoms, all to improve patient outcomes, quality of life and quality of care. Leading to better, standardised care for those living with endometriosis.
For further information on the NECST Network or any questions, please contact the NECST Network’s Clinical Trials Network Manager Dr Cecilia Ng at cecilia.ng@jeanhailes.org.au or visit us at www.necstnetwork.org.au.
