NECST Network

Research & partnerships

'Research' wooden letters

Partnerships

Australian Longitudinal Survey on Women’s Health (University of Queensland, QLD)

Prof Gita Mishra and Dr Ingrid Rowlands from the University of Queensland led the research into the prevalence and incidence of endometriosis in Australia. In partnership with the Australian Institute of Health and Welfare (AIHW), a report, “Endometriosis in Australia: prevalence and hospitalisations” on the national prevalence of endometriosis was published by the AIHW in August 2019. Using 20 years of data from more than 14,000 women from the Australian Longitudinal Study on Women’s Health (ALSWH), it was determined that one in nine women were diagnosed with endometriosis by the time they reached the age of 40-44 and there were around 34,200 endometriosis-related hospitalisations between 2016-2017.

The results of this study have also been published in a medical and scientific journal.

Endometriosis Digital Platform (Robinson Research Institute, University of Adelaide, SA)

Led by Prof Louise Hull and her team (Mr Marcus Goddard, Dr Beck O’Hara and Dr Diksha Sirohi) at the Robinson Research Institute (University of Adelaide), the Endometriosis Digital Platform will be designed to respond to the needs of the endometriosis community, with a focus on the unmet needs and research into improving patient outcomes of those living with endometriosis. The platform will be co-created with the endometriosis community including the Australian Coalition for Endometriosis (ACE), people with endometriosis, and their supporters, and the Stakeholder Advisory Group (includes clinicians, researchers, health informatics specialists and IT developers).

This research is being supported by the Australian Government Department of Health and Jean Hailes for Women’s Health.

Notice Board

Take part and get involved in research that is occurring around the country to improve outcomes for those with endometriosis, adenomyosis and associated conditions.

The MCRI LongSTEPPP Project

The LongSTEPPP project stands for the Longitudinal Study of Teenagers with Endometriosis, Period and Pelvic Pain in Australia

  • The study is for young people aged 10-18 years and their parent/guardian who have been referred to a Gynaecologist (public or private) or an endometriosis and pelvic pain GP clinic.
  • The purpose of LongSTEPPP is to find out how we can best care for young people experiencing period pain, pelvic pain, or who may have suspected or confirmed endometriosis.
  • We started mid-2022 and will be running until the at least end of 2027. We check in on participants yearly for 5 years with a series of online questionnaires.
  • It takes the young person about an hour a year and their parent guardian about 20 minutes and all of it can be done online.

Who can participate?

  • The study is for young people aged 10-18 years and their parent/guardian.
  • You have been referred to a Gynaecologist (public or private) or an endometriosis and pelvic pain GP clinic.
  • Those interested can sign up here via the webpage or using the QR code below.

Research Investigators

Professor Sonia Grover (Principal Investigator), Prof Harriet Hiscock, Prof Catherine Bennett, Dr Courtney Munro, Prof Andrew Chanen, Dr Rebecca Deans, Dr Julie Abimanyi-Ochom

Contact details

If you have any questions or to find out more, call +61 450707234 or email: longsteppp@mcri.edu.au.

W: www.mcri.edu.au
IG: @thelongeststeppp
IG: @murdoch_childrens

Publications

  • Rowlands, IJ, Abbott, JA, Montgomery, GW, Hockey, R, Rogers, P, Mishra, GD. Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. BJOG 2020; https://doi.org/10.1111/1471-0528.16447. 00: 1– 9.

Videos

  • 6 October 2021

    Australian Longitudinal Study on Women’s Health

    Thinking about IVF? Get checked for endometriosis first.