Abstract
<h3>Study Objective</h3> To establish a nationally coordinated clinical database on endometriosis in response to the Australian National Action Plan for Endometriosis (2018)<sup>1</sup>. <h3>Design</h3> An online, secure cloud-based data base with minimum core clinical and health data are collected across eight modules: 1) Demographics 2) Clinical Presentation 3) PROMs including the Euroqol (EQ)-5D and Endometriosis Health Profile (EHP)-30, 4) Clinical Presentation Diagnosis, 5) Imaging (ultrasound and/or MRI) 6) Medical Management 7) Surgical Management and 8) Histopathology. Participants in the NECST Registry are followed up at 6, 12 months and annually, capturing changes to their symptoms and management and to complete the PROMs EQ-5D and EHP-30 questionnaires. <h3>Setting</h3> Recruitment is possible from hospitals, specialist private clinics, and the general community via social media. <h3>Patients or Participants</h3> Women and people assigned female at birth, 18 years and over, experiencing endometriosis-related symptoms (chronic pelvic pain, infertility and/or abnormal uterine bleeding) or have been diagnosed with endometriosis or a related condition (adenomyosis). <h3>Interventions</h3> N/A. <h3>Measurements and Main Results</h3> To date, 890 participants have been recruited, 305 are from hospitals and specialist clinics and 585 from general community recruitment. Age range 19 – 66 years (mean age 35). From 469/890 participants who completed the Clinical Presentation and Medical History questionnaire, the most common presenting symptom was dysmenorrhoea (n = 214) and other types of pelvic pain (n = 65). From 436/469 participants who had a previous diagnosis of endometriosis, diagnosis was made at laparoscopy in 436 participants and based on symptoms and imaging in 57 participants. Ten participants recorded they had no symptoms relating to endometriosis. <h3>Conclusion</h3> The NECST Registry will provide life course and associated patient-outcomes data for women living with endometriosis and associated conditions.
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