Welcome to the National Endometriosis Clinical and Scientific Trials (NECST) Registry to improve endometriosis care
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 and adenomyosis.
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, you’ll be joining others who also believe research is the key to finding answers for endometriosis.
To gather information over time to understand the causes of endometriosis and improve care and quality of life for people living with endometriosis (including adenomyosis).
The NECST Registry is run by researchers across Australia. It is coordinated by Jean Hailes for Women’s Health and funded by the Australian Government’s Medical Research Future Fund (MRFF).
You are invited to join the NECST Registry if you:
If you agree to join the registry, you will be asked to sign the online Participant Consent Form and proceed to our surveys. These surveys take about 45 minutes to complete and asks questions about:
Six and 12 months after the first survey and then every year for as long as you are willing to continue, we will send you links to follow-up surveys. They take about 20 minutes to complete and ask questions about:
Note: You don’t have to complete all the survey questions at one time. You will be able to save your answers and come back to finish the survey (you will receive an email with a link to return to the survey).
For your registration surveys, the time it will take to complete:
For the ongoing surveys (sent at 6, 12 months and annually), the time it will take to complete:
If you agree to join the registry we will also ask your permission (consent) for the doctor who cares for you (if she or he is part of the NECST Registry), to add clinical information about your endometriosis to the registry.
If you agree the hospital and research staff will record results and clinical data on the following:
Linking to other databases
We will also ask your permission (consent) to link your information to existing databases including:
If you agree to take part in the NECST Registry, you can withdraw at any time without giving a reason. This will not affect any of the care you receive.
All information collected from (or about) you will be kept confidential and any personal information you provide will be managed in accordance with data protection legislation and all relevant country and state specific privacy legislation.
Your information will be kept secure by VCS Foundation Ltd, who manage the secure data platform that hosts the NECST Registry.
Only the research and clinical care team (including research assistants and the data management team) will have access to your information, unless:
Summaries of the information collected will be presented at local, national and international scientific conferences and published in an academic scientific journal. Individual participants will not be identified in any reports arising from the NECST Registry.
If you have any complaints about the study or any of the study team, you have the right to make a complaint. This will not affect the care or treatment that you are receiving. To make a complaint please contact:
Monash Health Human Research Ethics Committee
Contact person: Ms Deborah Dell
Position: HREC Executive Officer
Telephone: 03 9594 4611
Quote protocol number: HREC/62508
To join the registry and help clinicians and researchers understand endometriosis better, please click here to sign the consent and access the first survey (please also have your Medicare number with you).
This project is endorsed by the following Endometriosis Consumer Advocacy organisations:
EndoZone 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.
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.
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.