The NECST Registry is designed to describe patterns of care following diagnosis of endometriosis. The aim of the registry is to identify variation in treatment and outcomes of patients with endometriosis and endometriosis-related symptoms, with a view to improve patient outcomes and quality of care.
The NECST Registry is a core component of the NECST Network objectives.
The NECST Registry Working Groups are a group of volunteer clinical and scientific experts formed to provide specific guidance on the development of the NECST Registry modules and minimum core dataset related to endometriosis.
|1. Demographics and consent||Jason Abbott (Lead) Gita Mishra Grant Montgomery Peter Rogers|
|2. Clinical presentation and medical history||Jason Abbott (Lead) Sonia Grover Louise Hull Luk Rombauts Anusch Yazdani|
|3. Patient reported outcome measures (PROMs)||Mike Armour (Lead) Georgina Chambers Melissa Parker Anusch Yazdani|
|4. Imaging (ultrasound and MRI)||Sofie Piessens (Lead) George Condous Stephen Knox Valeria Lanzarone Jo Ludlow Alexandra Stanislavsky Kate Stone Natalie Yang|
|5. Medical management||Louise Hull (Lead) Jade Acton Rebecca Deans Susan Evans Sonia Grover Luk Rombauts|
|6. Surgical management||Jason Abbott (Lead) Alan Lam Emma Readman Jim Tsaltas Michael Wynn-Williams Anusch Yazdani|
|7. Histopathology and biobanking||Peter Rogers (Lead) Caitlin Filby Caroline Gargett Grant Montgomery Wayne Ng Luk Rombauts|
Each of these modules will contribute to the overall dataset in the NECST Registry however, not all modules will be completed for each participant, since not all participants will require all interventions.
In defining the essential data items, we have referred to the World Endometriosis Research Foundation (WERF), EPHect Project that has SOPs and standardisation for data collection for endometriosis research.
Comment: Will need a link to a FAQ and also Instructions for NECST Registry Users documents
The NECST Registry will be stored and managed in a for-purpose, customised on-line platform built, and IT managed under contract by VCS Digital, a division of VCS Foundation. VCS Foundation is a Victorian not-for-profit health promotion charity with over 30 years’ experience in delivery and management of population-based health registry services (e.g. National HPV Vaccination Program Register for the Commonwealth Department of Health and the Victorian and South Australian Cervical Screening Registries).
The project/research management and data custodianship of the Registry will occur at Jean Hailes for Women’s Health. Investigators will be able to access, through unique log-ins and secure two-factor authentication, relevant views of the NECST Registry online (as per defined user roles which only allow entering of data or updating of records and viewing of database reports of direct relevance to that clinician/investigator/their service).
For more information on the VCS Foundation, please visit https://www.vcs.org.au/