By Ewelina Rogozińska and Krina Zondervan
On 8th September, as a CROWN Coordinator, I had a pleasure to talk about the initiative during the 4th meeting of the UK Endometriosis Network. This annual event aims to bring together researchers in the UK involved in endometriosis research ranging from basic medical science to clinical trials. This year, the event was organised by the Oxford-based team led by Prof Christian Becker, Dr Katy Vincent and Prof Krina Zondervan.
Before the CROWN presentation, Professor Zondervan and Lone Hummelshoj spoke about an initiative started by the World Endometriosis Research Foundation in 2013: the Endometriosis Phenome and Biobanking Harmonisation Project (EPHect). The aims of WERF EPHect are to enable large-scale, cross-centre, epidemiologically robust research into the causes of endometriosis, novel diagnostic methods, and better treatments, through the development of an international consensus on standardised data collection and Standard Operating Procedures for banking of bio-samples. Four papers describing the data collection tools and SOPs developed were published open access in 2014; all tools are reviewed tri-annually, with the next review scheduled for 2016/17.
Recent systematic review of randomised trials evaluating a surgical intervention for the treatment of endometriosis symptom highlighted a variation in outcome reporting that prohibits comparison, combination, and synthesis of data useful for clinical decision making. iHOME project lead by the author of the earlier mentioned review aims to address above issue through development, dissemination, and implementation of a core outcome set for intervention trials in endometriosis.
Even though CROWN and WERF EPHect objectives differ in focus, both initiatives share similar values, and partnership seems to be a natural way forward. Robust and reliable scientific research, inclusiveness and fostering collaborations are paramount in both initiatives.
Despite achievements so far, we should not be complacent. Voices of concerns or perceived barriers to implementation of standards should be welcomed and used as guidance for the areas to be improved. Among the points raised during the after presentation, discussions were concern regarding the timing and uptake of the standardised tools, and limited communication between different medical specialities, in particular the general pain and endometriosis/gynaecology research fields. Those concerns should not be ignored, if we want to build a genuinely collaborative environment for the betterment of endometriosis research through the promotion of data collection and reporting standards.