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

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 an

SUBMITTER: Ng CHM 

PROVIDER: S-EPMC10305626 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature