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About the study


Endometriosis is a common disease where tissue similar to the lining of the uterus grows outside on other organs causing scarring and pain. Endometriosis may cause painful periods, heavy periods, and pain during sex and when going to the toilet. Some women are so severely affected by the disease that they struggle emotionally and physically with their everyday lives. Research from Women’s Health Australia shows that an estimated 1 in 9 women under the age of 45 in Australia will be diagnosed with endometriosis. This means that you likely know someone with endometriosis.

Very little is known about what causes endometriosis and who might be most at risk of developing the disease. A person’s genes, their family history, and their health and experiences during childhood and adolescence might tell us a lot about who is most likely to get endometriosis. We want to find out more about why endometriosis develops, so that women can be diagnosed earlier and have better treatments.

Aims of the study

The Genetic variants, Early Life exposures, and Longitudinal Endometriosis symptoms Study (GELLES) is planning to look at a person’s genes and health across their life to find out more about endometriosis. To do this, GELLES needs women both with and without endometriosis to take part.

How to participate

The GELLES study is currently open to all women from the 1989-95 cohort of the Australian Longitudinal Study on Women’s Health who completed the latest survey in 2019. You don’t need to have an endometriosis diagnosis or symptoms to participate. If you agree to participate, you will be asked to:

  • Complete a confidential online survey, which will take approximately 30-60 minutes to complete, and;
  • Provide a sample of your saliva for genetic analysis. If you consent to providing a saliva sample, you will be mailed a saliva collection kit and instructions.

    If you choose to participate by completing the online survey, you are not obligated to provide a saliva sample.

Women from the 1989-95 ALSWH cohort will be invited to take part in GELLES from late 2021 via email. Keep an eye on your inbox. Please visit the participant information page to read the study information statement.

Everyone who completes the survey by 5:00 pm AEST on Sunday May 29th 2022 will go into the GELLES prize draw, with a chance to win a $1,000 Prezzee Smart eGift Card to be used online or in-store at 100+ Australian retailers. For more details about Prezzee Smart eGift Cards go to: https://www.prezzee.com.au/store/#gift-cards. The eGift card will be sent via email. Competition terms and conditions can be found on the information for participants page.

Study funding

The GELLES study is a substudy of the Australian Longitudinal Study on Women’s Health (ALSWH). It is funded by the Medical Research Future Fund.