Excluded data sources

Several additional data sources were identified or suggested by stakeholders through the consultation process. These are listed alphabetically in Table 11 along with a brief rationale for their exclusion.

Table 11: Currently excluded data sources

Data source

Rationale for exclusion

45 and Up Study

Currently excludes younger populations(a) and is not nationally representative – NSW only.

Endometriosis and Pelvic Pain Clinic (EPPC) Minimum Dataset

Sample not representative, not suitable for population monitoring or monitoring care pathways as it only measures a small proportion of contact with specific health services.

The Grollo–Ruzzene Foundation Young Women’s Health Study

Not nationally representative (only 3 Eastern states) and ongoing monitoring of trends is not possible (cross-sectional one-off study conducted in 2016–17) but will be considered for reporting contextual or supplementary information.​​

Longitudinal Study of Teenagers with Endometriosis, Period and Pelvic Pain (LongStePPP)

Small sample size, may be valuable for analyses of risk factors, interventions and outcomes, but (due to small sample size) not suitable for population monitoring or monitoring care pathways.​​

MenoDoctor Survey

The MenoDoctor Survey was a one-off survey which allowed participants to self-select. As such, there may be bias.

National Endometriosis Clinical and Scientific Trials (NECST) Registry

Registry for endometriosis and pelvic pain. Not nationally representative, small sample size.

Personality and Total Health (PATH) Through Life Study

Not nationally representative, ACT and surrounding regions only.

RAINE Study

Not nationally representative, Western Australia only. Small sample size (less than 3,000) making it less generalisable to people living in Australia.

Survey of Women’s Health in the ACT

Not nationally representative, ACT or surrounding region only. Participants also self-select and as such, there may be bias.

SWASH survey of lesbian, bisexual, queer and other non-heterosexual identifying women engaged with LGBTIQ communities

Not nationally representative.

Victorian Women’s Health Survey

Not nationally representative, Victoria only.

VITAL registry

Currently excluded as it’s not nationally representative. Participants also self-select and there may be bias. May be explored for future reporting.

Women’s Healthy Ageing Project (WHAP)

Not nationally representative, Metropolitan Melbourne region only.​​​​​​

(a) Intended to be expanded to younger age groups (18 and up); may be explored in future reporting due to large sample size.