Health Professionals

The NECST Registry has been developed to be a national resource of standardised patient data that will facilitate high-quality research aiming to understand the causes of endometriosis, improve diagnosis and treatment outcomes, and reduce the burden of disease for patients with endometriosis-related symptoms or diagnosed with endometriosis.

The NECST Registry aims to collect and securely store demographic and health-related information from consenting participants, who experience and/or seek management for endometriosis and/or endometriosis- and related symptoms (e.g. chronic pelvic pain, fatigue, infertility, etc.) utilising a minimum agreed and standardised core dataset. Such data will be collected at baseline enrolment and prospectively at regular intervals from participants, allowing longitudinal health outcomes data to be collected.

People are eligible to participate in the registry if they are:

• Women aged 18 and over
• Residing in Australia
• Presenting with symptoms consistent with suspected or confirmed endometriosis.

• Potential participants are identified through referral to, or attendance at, a gynaecology service provider who is part of the NECST Registry.
• The registry uses an opt-in approach for recruitment.
• Potential participants are sent an Invitation Letter and Consent Forms.
• Participants can withdraw at any time and ask that their data be removed from the registry.

Eligible and consenting participants will be asked to complete questionnaires (online) to collect the following health information:

• Demographics
  
• Clinical and medical history
• Patient-Reported Outcome Measures (PROMs). These are assessments of overall health and quality of life as reported by patients at specific time points after diagnosis. The two PROMs tool being used by the NECST Registry are the EQ-5D-5L (general overall health state) and also the Endometriosis Health Profile (EHP)-30 (endometriosis specific).

Clinicians will be required to collect data for the NECST Registry, with additional or missing data collected from electronic or paper medical records by NECST Network and Registry staff, where required.

The data collected will include diagnostic information, imaging information (ultrasound and/or MRI) and treatment information (medical and/or surgical).

To ensure that data collected in the NECST Registry is sustainable, the working groups defined a limited series of essential data items (minimum core dataset). This will form the ‘data spine’ to which additional items may be added for time-limited collection or permanent collection depending on outcome measures.

The NECST Registry will consist of a series of modules that all participating sites (public and private) will use to collect an identical set of ‘epidemiologically sound’ data. The modules that are required include:

• demographics and consent
• clinical presentation and medical history (including follow-up visits)
• patient reported outcome measures (PROMs; quality of life)
• imaging (ultrasound and/or MRI)
• medical management
• surgical management
• histopathology and biobanking*

* The biobanking module is planned for development and implementation in the future.

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, which has SOPs and standardisation for data collection for endometriosis research.