LACE data sources
The LACE Research Data resource is a linked data collection that brings together information from the Australian Childhood Cancer Registry with health and administrative data held by the Australian Government and each of the eight states and territories: New South Wales (NSW), Queensland (QLD), Victoria (VIC), Western Australia (WA), South Australia (SA), Tasmania (TAS), Northern Territory (NT), and the Australian Capital Territory (ACT), as outlined in Table 1.
This linked data collection makes it possible to study outcomes for childhood cancer survivors across Australia.
Table 1. Data collections and coverage in the LACE Research Data Resource
| Data collection | State/territory coverage | Description |
|---|---|---|
| National | ||
| Australian Childhood Cancer Registry (ACCR) | All | The Australian Childhood Cancer Registry (ACCR) includes records of every child in Australia diagnosed with cancer before age 15 since 1983. The information comes from cancer registries in each state and territory and from hospitals that treat these patients. |
| Medicare Benefits Schedule (MBS) | NSW, ACT, QLD, VIC | Australia provides universal health insurance for primary care and specialist care outside hospitals, with national data stored in the MBS database. These records include processed claims for subsidised medical, specialist, nursing, allied health, and diagnostic services provided by registered practitioners. |
| Pharmaceutical Benefits Scheme (PBS) | NSW, ACT, QLD, VIC | The Australian Government helps pay for many prescription medicines. The Pharmaceutical Benefits Scheme (PBS) records all medicines given to patients that are covered by the scheme. Before 2012, this only included medicines with a subsidy. Since April 2012, all dispensed medicines are recorded. |
| Medicare Consumer Directory (MCD) | NSW, ACT, QLD, VIC | The Medicare Consumer Directory (MCD) records of where people live over time are used to understand social and demographic factors and the areas they live in. |
| National Death Index (NDI) | NSW, ACT, QLD, VIC | The National Death Index (NDI) includes previous date and cause of death. This allows tracking of deaths for people who move to a different state, which state and territory registries do not capture. |
| Australian Cancer Database (ACD) | NSW, ACT, QLD, VIC | The ACD is a register of new cancer cases since 1982. It provides cancer diagnosis information for comparison groups. |
| Australian Early Development Census (AEDC) | NSW, ACT, QLD, VIC | The Australian Early Development Census (AEDC) is a register of assessments of early childhood development is done every three years for children in their first year of school. Teachers complete a 100-question checklist for each child. |
| National Cancer Screening Registry (NCSR) | Bowel/ Cervical: NSW, ACT, QLD, VIC; Breast-Screen: NSW, VIC, QLD | The National Cancer Screening Registry (NCSR) had information on participation in breast, bowel, and cervical cancer screening programs is included. |
| State and Territory | ||
| Admitted Patient Data Collections (APDC) | All | The Admitted Patient Data Collections (APDC) is a record of all admissions to public hospitals and some private hospitals. It includes details about healthcare use, other health conditions, and outcomes. Diagnosis and procedure codes show cancer treatments beyond the first treatment plan. |
| Emergency Department Data Collections (EDDC) | All | The Emergency Department Data Collections (EDDC) records patient visits to emergency departments in public hospitals and some private hospitals. |
| Non-Admitted Patient Data (NAP) | NSW, ACT, QLD, VIC, SA | The Non-Admitted Patient Data (NAP) records information on healthcare services provided in outpatient clinics at public hospitals. |
| Mental Health Data Collections (MHDC) | NSW, QLD, VIC, TAS, WA | The Mental Health Data Collections (MHDC) records mental health care, including contacts between clinicians and patients in outpatient clinics, outreach programs, and community residential settings or support services. |
| Perinatal Data Collections (PDC) | All | The Perinatal Data Collections (PDC) records data on all live births and stillbirths of at least 20 weeks’ gestation or weighing at least 400 grams. |
| Birth Registrations (BR) | All | The Birth Registrations (BR) includes information on all births registered within State and Territory Registries of Births, Deaths and Marriages. |
| Death Registrations (DR) | NSW, ACT | The Death Registrations (DR) includes deaths registered with State and Territory Registries of Births, Deaths and Marriages. Deaths are recorded in the state where they occur. |
| Cause of Death Unit Record File (COD) | NSW, ACT | The Cause of Death Unit Record File (COD) includes death records and cause of death compiled from State and Territory Registries and Coroners through the National Coronial Information System. |
| National Assessment Program – Literacy and Numeracy (NAPLAN) | NSW, ACT, QLD, VIC, TAS, SA, NT | The National Assessment Program – Literacy and Numeracy (NAPLAN) includes Information on each child’s school performance based on assessments in Years 3, 5, 7, and 9. |
| Senior Secondary School Data (SSD) | NSW, VIC | The Senior Secondary School Data (SSD) records details on high school completion. |