Endometriosis is an extremely common gynaecological disease characterised by endometrial tissue growing outside the uterine cavity. It is associated with chronic pelvic pain, subfertility and occurs in up to 11% of reproductive age Australian Women. Improved outcomes for endometriosis patients has been declared a national priority and a national action plan, that highlights the need for research, has been developed by the federal government.
As a crucial first step in addressing the national priority we have established research infrastructure within Queensland that will support quality, large scale analysis of clinical and biospecimen data. Appropriate ethics and site specific approval were acquired prior to research commencing. Data collection employs online and bioinformatic tools. Data and sample collection encompasses; i) pre surgical patient derived symptomatic data ii ) post-surgical patient derived treatment response data iii) physical lesion and surgical data iii) serum and plasma iv) DNA and genotyping data v) predictive genetic risk scores for endometriosis vi) endometrial tissue and viii) endometriotic lesions.
The developed infrastructure has been implemented for approximately 8 months. In this time we have recruited over 250 patients. Our rate of recruitment remains above >90% of patients approached. Of these patients we have a pre-surgical questionnaire completion rate of ~ 86% and a surgical form completion rate of >98%. Blood sample and successful DNA isolation and genotyping is also currently at ~85%.
In response to the call for national action on endometriosis research we have established a robust, efficient and comprehensive pipeline of data and sample collection. A high level of engagement from endometriosis sufferers and a streamlined collection pipeline using bioinformatic tools has resulted in a recruitment and collection outcomes that have exceeded expectations and lay the foundation for many endometriosis and reproductive studies and potential collaborative networks.