International Collaboration to Harmonise Outcomes and Measures for Endometriosis
Endometriosis is a condition where cells similar to those found lining the inside of the womb (endometrium) are found outside the womb. This disease remains poorly understood and affects around 10% or 1.5million women within the UK. It can cause significant pelvic pain and subfertility.
What is the challenge?
- Research studies testing new treatments for endometriosis often measure different outcomes.
- For example, when a new medication is being tested, one researcher may decide to measure pain between periods (a outcome) and another researcher may only measure overall pain (a different outcome).
- When the two studies are finished, the results from both studies cannot be easily compared or combined to see which treatments work best.
- This is a barrier to improving the care women receive.
How can I help?
- Our aim is to overcome this barrier by developing a common set of outcomes that all researchers studying endometriosis can use.
- If you have experience of endometriosis, either as a patient, healthcare professional or researcher, you can help.
- We would like to find out which outcomes you think are important.
We invite you to sign up to become an iHOME collaborator.
- We will ask you to take part in a three round questionnaire.
- Each round will take no more than thirty minutes to complete.
Please help us to improve endometriosis research enabling doctors and nurses to provide better treatments and care for women and their families.
iHOME is hosted by Queen Mary, University of London.
Study Management Group
The iHOME study group invites patients and professions to contribute to advancing endometriosis research by completing our three round online survey.
Click here to register your interest in becoming an iHOME Collaborator.