Cecilia Ng, Jean Hailes for Women's Health, cecilia.ng@unsw.edu.au
The NECST Registry is 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 living with endometriosis, endometriosis-related symptoms, or endometriosis-related conditions (like adenomyosis).
Population: Women and those assigned female at birth aged 18+, have had surgery which has confirmed that you have endometriosis or adenomyosis or have any of the following symptoms - persistent pelvic pains, problems with falling pregnant, excessive menstrual bleeding or bleeding between periods, heavy periods, pain when urinating, pain with bowel motions/passing stools and pain with sex.
Data collection and outcomes: Health and clinical data are collected across eight modules 1. Consent and participant demographics 2. Clinical presentation and medical history 3. Patient reported outcome measures (PROMs; EQ-5D and EHP-30) 4. Environmental and lifestyle risk factors 5. Imaging tests 6. Medical management 7. Surgical management 8. Histopathology
- Feedback to contributing clinicians
- Shared with consumers
- Reported to Federal Health Department
- Annual Progress report to ethics
- EuroQol EQ-5D-5LC
- Endometriosis Health Profile EHP-30
To be determined
New South Wales
- Prince Of Wales Private Hospital
- Royal Hospital For Women
- St George Hospital
- Westmead Hospital
South Australia
- Women's and Children's Hospital
Victoria
- Monash Health
- Royal Women's Hospital