Researchers all over the world have joined forces to accelerate and improve research into endometriosis – an overlooked diseases that causes pelvic pain and infertility for an estimated 176 million women all over the world. The disease costs Danish society DKK six billion a year.

2014.10.28 | Mette Louise Ohana

Ten per cent of all women and girls of childbearing age suffer from endometriosis.

A worldwide network comprising 34 endometriosis research centres and three pharmaceutical companies have joined forces to improve research into the chronic disease endometriosis. They have adopted common global standards for the collection of biological samples and data. The initiative is hitherto unseen for a single disease. The motive is the lack of knowledge about the disease, which causes approximately ten per cent of all women and girls of childbearing age to experience pain in connection with menstruation, ovulation and sexual intercourse. The disease also leads to infertility in approx. one third of the women.

"We do not know much about what causes endometriosis and neither do we know much about what causes the disease to continue. This makes it a difficult disease to diagnose, treat, cure and prevent. It is a widespread disease that has been overlooked for years. This has also had an impact on research opportunities. However, it affects millions of women on a daily basis and also has major social consequences in the form of lost working hours and the like. That is why this is a very important step in the right direction," says Associate Professor Mette Nyegaard from Aarhus University, who is a member of the network behind the new initiative, called the Endometriosis Phenome and Biobanking Harmonisation Project.

Many women are not diagnosed. Axel Forman, who is professor and consultant at Aarhus University and Aarhus University Hospital, estimates that approximately 100,000 Danish women suffer from endometriosis. According to an international study, which the Danish Rigshospitalet participated in, the disease costs Danish society almost DKK six billion annually due to reduced quality of life, sick days and reduced fertility.

Research has lagged behind

The common standards for the collection of tissue samples and clinical data are necessary for international cooperation and to improve diagnosis and treatment of the disease. The hope is that it will be possible to detect various subtypes of endometriosis, which can lead to more targeted treatment as is the case with other diseases such as e.g. cancer and heart disease, where diagnosis and treatment have been revolutionised by moving away from a ‘one-size-fits-all’ approach.

"Endometriosis behaves differently and looks different in women but we do not know which patterns and differences are important in order to target our treatment. Previous studies have been small with very selective patient groups and this has made it impossible to identify the variants of the disease. For example, we have not been able to explain why endometriosis leads to childlessness for some but not for others," explains Axel Forman. 

This has meant that research into endometriosis has lagged behind.

"We will first have a real chance to understand the different types of endometriosis and their causes when we have collected sufficient and comparable data. Only then is it possible to develop targeted treatment for the many girls and women who are dependent on us finding a solution for their fight against this disease," says Mette Nyegaard.

The common tools for the collection of data have just been published in the scientific journal Fertility and Sterility and are available at endometriosisfoundation.org/ephect/.

About endometriosis

Endometriosis is a chronic disease that occurs when tissue that is similar to the lining of the uterus grows outside the uterus. The tissue is affected by female hormones and bleeds into the abdominal cavity in connection with menstruation. This can cause inflammatory conditions and form fusions and scar tissue. The symptoms of endometriosis are pelvic pain in connection with menstruation, ovulation and sexual intercourse, which can also lead to infertility and pronounced fatigue. The disease is currently treated with analgesics, hormonal treatments and surgery. There is no known cure for the disease. 

Further information

Associate Professor Mette Nyegaard
Aarhus University, Department of Biomedicine
Mobile: +45 2231 3602
nyegaard@biomed.au.dk