The NECST Registry

Welcome to the National Endometriosis Clinical and Scientific Trials (NECST) Registry to improve endometriosis care

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Endometriosis patient with doctor

Overview

The NECST Registry aims to build a complete picture of how endometriosis affects people’s lives. To do this the NECST Registry collects information over time from people living with endometriosis, endometriosis-like symptoms or endometriosis-related conditions (like adenomyosis). The information will be used by clinicians and researchers to improve care, develop better treatment options and more affordable medicine for those living with endometriosis, opens in a new window and adenomyosis, opens in a new window.

It’s not known what causes endometriosis and it can only be diagnosed with surgery. As a person living with endometriosis, your voice could be the start of a breakthrough to improve understanding of the condition and how it can be best managed. By taking part in the NECST Registry, opens in a new window, you’ll be joining others who also believe research is the key to finding answers for endometriosis.

Participate in the NECST Registry

Do you have symptoms or a diagnosis of endometriosis? Sign up to the NECST Registry now and be part of this vital Australian research project.

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FAQ

Research Affiliations

EndoZone, opens in a new window is a National Endometriosis Digital Health Platform co-created by researchers, clinicians and the endometriosis community.

Australasian Interdisciplinary Researchers in Endometriosis (AIRE) is an interdisciplinary initiative designed to identify gaps in research and clinical practice that matter to people with endometriosis, to address those gaps through collaborative high-quality research and funding applications, and to elevate the voices of people living with endometriosis. This group is comprised of endometriosis and pelvic pain academics, clinicians, and established endometriosis advocacy members.

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NECST Registry Working Groups

The NECST Registry Working Groups are a group of volunteer clinical and scientific experts formed to provide specific guidance on the development of the NECST Registry modules and minimum core dataset related to endometriosis.

Participants

The NECST Registry collects and securely stores data to monitor the health, service utilisation, medication use, surgery and patient-reported outcomes of those receiving care for their endometriosis and/or endometriosis-related symptoms.