To facilitate the advancement of research into endometriosis - a poorly understood condition causing pelvic pain and infertility in an estimated 176 million women worldwide - the World Endometriosis Research Foundation (WERF) has released global standardised tools for the collection of biological samples and data in endometriosis research.

The work involves collaboration among 34 academic endometriosis research centres and three diagnostic/pharmaceutical companies - an unprecedented initiative for a single disease.

Through these standardised data and bio-specimen collection tools, published in the scientific journal Fertility and Sterility [1], it may now be possible to discover distinct sub-types of endometriosis [2] leading the way towards specifically targeted treatments for the disease.

Abandoning "one-size-fits-all" has revolutionised success in the diagnosis and treatment of other diseases, such as certain cancers and heart disease. However, for endometriosis these discoveries currently lag behind [3]. One of the two Principal Investigators, Associate Professor Stacey Missmer of Harvard University, explains:

"We know little about what causes endometriosis, nor what allows the disease to persist, which limits successful diagnosis, treatment, cure, and prevention for the millions of girls and women whose lives are affected daily by this painful disease."

"We do know that endometriosis looks and behaves differently among women - but not which patterns and differences are important to target. Consequently the science of endometriosis has been held back due to small studies with limited, highly selective, patients that have, so far, made identification of these unique disease sub-groups impossible," said Professor Missmer.

To facilitate the robust, large, international collaborations necessary to improve diagnosis and treatment of endometriosis, WERF gathered a team of 54 academia and industry experts from 16 countries to develop standardised collection tools and protocols - the WERF Endometriosis Phenome and Biobanking Harmonisation Project (EPHect) [4].

"EPHect is the first successful standardisation of data and sample collection at such a global scale for a single disease," asserted the other Principal Investigator, Associate Professor Krina Zondervan of Oxford University.

"Big data can solve complex clinical scientific issues, and we encourage every single centre that is serious about research in endometriosis to take up the challenge to enter into global collaboration by using these freely available protocols to advance our field."

"Only when sufficient and consistent data have been gathered do we stand a real chance to understand the causes and characteristics of different endometriosis sub-types, which will enable the development of targeted treatments for the millions of girls and women who rely on us to find a solution to their struggle with this disease," concluded Professor Zondervan.

WERF President, Professor David Adamson, adds: "WERF is extremely grateful to the many international scientists, clinicians, and other stakeholders, who have contributed to produce this innovative landmark initiative to reduce the global burden of endometriosis."

The WERF EPHect tools are freely available from www.endometriosisfoundation.org/ephect.