Skip to main content For people living with endo
We know there are a lot of unanswered questions when it comes to endometriosis. One project that came out of the National Action Plan for Endometriosis (2018) is The National Endometriosis Clinical and Scientific Trials (NECST) Network. This is a research network made up of a group of clinicians, healthcare providers, scientists, patients, and consumer representatives who are determined to fill the gaps in endometriosis research to improve patient outcomes and our understanding of this condition.
A major research project being undertaken by members of the NECST Network is to generate Australia’s first long-term, health dataset on those living with endometriosis, its symptoms and related conditions (including adenomyosis). This project is called the NECST Registry and will enable data to be collected from endometriosis patients throughout their journey from diagnosis to medical treatment, surgery and beyond. The long-term data collected during this project will, over time, help record a detailed picture of the disease – its effects, symptoms, treatments, care and outcomes.
The NECST Network – an Australian Government initiative, has received grant funding from the Australian Federal Government and is being administered by UNSW Sydney, following initial administration by Jean Hailes for Women’s Health.
If you would like to find out more about the NECST Network, become a member or get in contact with us, please visit http://www.necstnetwork.org.au or for the Gynaecological Research and Clinical Evaluation (GRACE) Research Unit at The Royal Hospital for Women and UNSW Sydney, please visit https://unsw.to/grace.
For clinicians
The National Endometriosis Clinical and Scientific Trials (NECST) Network is a research network consisting of a collaborative group of clinicians, healthcare providers, researchers, patients, and consumer advocates. They have come together to coordinate support for research organisations and conduct research for all aspects of endometriosis care and management.
A major project of the NECST Network, is the NECST Registry – a national clinical database, aiming to collect longitudinal participant health and clinical data and facilitate high quality research aiming to understand the causes of endometriosis, improve diagnosis and treatment outcomes, and reduce the burden of disease for patients with endometriosis-related symptoms or diagnosed with endometriosis (including adenomyosis). Currently, there is a lack of consistently collected longitudinal and clinical data about endometriosis and adenomyosis in Australia. In addition, clear pathways for care are not yet available due to the lack of understanding of how endometriosis or adenomyosis develops and changes during a woman’s lifetime. This lack of knowledge contributes to the substantive delay that often occurs before a diagnosis of endometriosis or adenomyosis is made.
The NECST Registry will collect and securely store demographic and health related information from consenting participants who experience and/or seek management for endometriosis and/or endometriosis-related symptoms and conditions. These data will be made available to approved researchers undertaking endometriosis and endometriosis-related research. The NECST Network – an Australian Government initiative, has received grant funding from the Australian Federal Government and is being administered by UNSW Sydney, following initial administration by Jean Hailes for Women’s Health.
If you would like to find out more about the NECST Network, become a member or get in contact with us, please visit http://www.necstnetwork.org.au or for the Gynaecological Research and Clinical Evaluation (GRACE) Research Unit at The Royal Hospital for Women and UNSW Sydney, please visit https://unsw.to/grace. If you would like your hospital or clinic to recruit for the NECST Registry, email the NECST Network’s Clinical Trial Network Manager, Dr Cecilia Ng @ cecilia.ng@unsw.edu.au.