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. 2023 May 1;4(2):e230014.
doi: 10.1530/RAF-23-0014. Online ahead of print.

Establishing the Australian National Endometriosis Clinical and Scientific Trials (NECST) Registry: A protocol paper

Cecilia H M Ng  1 , Andrew G Michelmore  2 , Gita D Mishra  3 , Grant W Montgomery  4 , Peter Rogers  5 , Jason Abbott  6
Affiliations

Establishing the Australian National Endometriosis Clinical and Scientific Trials (NECST) Registry: A protocol paper

Cecilia H M Ng et al. Reprod Fertil. .

Abstract

Endometriosis is a common yet under-recognised chronic inflammatory disease, affecting 176 million women, trans and gender diverse people globally. The National Endometriosis Clinical and Scientific Trials (NECST) Registry is a new clinical registry, collecting and tracking diagnostic and treatment data, and patient-reported outcomes on people with endometriosis. The registry is a research priority action item from the 2018 National Action Plan for Endometriosis and aims to provide, large-scale, national and longitudinal population-based data on endometriosis. Working groups (consisting of patients with endometriosis, clinicians and researchers) developing the NECST Registry data dictionary and data collection platform started in 2019. Our data dictionary was developed based on existing and validated questionnaires, tools, meta-data and data cubes - World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonisation Project (EPHect), endometriosis CORE outcomes set, patient-reported outcome measures, the International Statistical Classification of Diseases-10th Revision Australian Modification diagnosis codes, and Australian Government datasets: Australian Institute for Health and Welfare (for sociodemographic data), Medicare Benefits Schedule (MBS; for medical procedures) and the Pharmaceutical Benefits Scheme (PBS; for medical therapies). The resulting NECST Registry is an online, secure cloud-based database; prospectively collecting minimum core clinical and health data across eight patient and clinician modules and longitudinal data tracking disease life course. The NECST Registry has ethics approval (HREC/62508/MonH-2020) and is registered on the Australian New Zealand Clinical Trials Registry (ACTRN12622000987763).

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Conflict of interest statement

CN reports grant funding from Medical Research Future Fund (MRFF) and other financial or non-financial interests with CSL Vifor as a previous employee (formerly Vifor Pharma Pty. Ltd.; past employee). GDM reports grant funding from NHMRC. PR reports grant funding from MRFF; Participation on a Data Safety Monitoring Board or Advisory Board with Bayer; Leadership or fiduciary role in other board, society, committee or advocacy group with Jean Hailes for Women’s Health (Board Member); and other financial or non-financial interests with University of Melbourne and Royal Women’s Hospital (employee). JA reports grant funding from MRFF; honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Hologic Australia; Participation on a Data Safety Monitoring Board or Advisory Board with Hologic Australia and CSL Vifor (formerly Vifor Pharma Pty. Ltd.); Leadership roles with the Australasian Gynaecological Endoscopy & Surgery Society (AGES; Past president), Heavy Menstrual Bleeding Clinical Care Standards 2017 and 2023 (Australian Government; Co-Chair), Expert Endometriosis Working Group and Endometriosis Clinical Guidelines Group (RANZCOG, Chair); Endometriosis Australia (Former Chair, 2021–2022 (Associate Editor). The other authors have no conflicts of interest to declare.

Figures

Figure 1
Figure 1
The chronological set of events in the design and development of the NECST Registry data dictionary and hosting platform.
Figure 2
Figure 2
Patient and clinician modules of the NECST Registry. EHP-30, Endometriosis Health Profile-30; EQ-5D-5L, Euroqol-5D-5L; MRI, magnetic resonance imaging; NECST, National Endometriosis Clinical and Scientific Trials; PROMs, patient-reported outcome measures; US, ultrasound.
Figure 3
Figure 3
Participant recruitment and NECST Registry data entry process. NECST, National Endometriosis Clinical and Scientific Trials.
See this image and copyright information in PMC

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