Northern Territory Perinatal Registry

Definition

The NTPR collection is legislated by the Public and Environmental Health Act 2011 (NT) and the Public and Environmental Health Regulations 2014 (NT).

The registry is located within the Health Statistics and Informatics unit of the Department of Health.

The scope of the perinatal collection includes:

1. all births in the Northern Territory (NT) where the outcome is a stillbirth baby of a gestational age of 20 weeks or weight of 400 grams, or a livebirth baby
2. the diagnosis of a structural or functional abnormality in a child aged up to  12  months that was present from conception or that occurs before the end of a pregnancy.
3. the death of a child within 1 year of age in the NT
4. the death of a woman during pregnancy or within 12 months after the end of a pregnancy

Purpose of these collections

The purpose of these collections is:

1. The provision of information to develop policy for the improvement of antenatal care and the wellbeing of women who are pregnant or have given birth; and
2. The provision of information for program evaluation and to support decision-making; and
3. The compilation of information in statistical form; and
4. The provision of information for completing the Perinatal National Minimum Data Set and for any other national reporting; and
5. The provision of information for research

The NTPR produces regular statistical reports, as listed below:

• Mothers and Babies Report (produced annually)
• Perinatal Trends Report

The NTPR also contributes data to National collections and reports by the Australian Institute of Health and Welfare:

• The National Perinatal Data Collection
• The National Perinatal Mortality Collection
• The National Maternal Mortality Collection
• The National Congenital Anomalies Data Collection

Release of data from the NTPR must be in accordance with the NT Public and Environmental Health Act and consistent with the NT Information Privacy Principles contained within the NT Information Act.

Please consult the NTPR Data release flowchart below and the NTPR data dictionary (available upon email request) to assist you in preparing your request. Data requests can be grouped into two broad categories:

• Aggregate data (i.e. the data is presented in summary or statistical format).
• Unit record data (i.e. each row contains details about a single person or case).

NOTE: Some data published by the NTPR is already available through the Open Data Portal

Contacts

NTPR
PerinatalRegistry.DoH@nt.gov.au

AIHW
info@aihw.gov.au or visit the National Perinatal Data Collection Website.

SA-NT DataLink
santdatalink@unisa.edu.au or visit the SA NT DataLink website.

NT HRGO
nthealth.rgo@nt.gov.au (Onsite research) or visit the NT Health Research and Health Data website.

NT HDGO
DataReleaseRequests.DoH@nt.gov.au or visit the NT Health website.

Submitting a data request to the NTPR

To submit a data release request please click on the below link and complete the online form:

Data Release Request Form

Please contact the NTPR PerinatalRegistry.DoH@nt.gov.au if you are not sure which form to complete, would like to discuss data availability, ethics requirements, or to obtain a letter of support to accompany your ethics application.

The following information outlines the process for requesting data from the NTPR. Data requests can be grouped into two broad categories:

Aggregate data (i.e. the data is presented in summary format as tables or graphs).

Note: NT Perinatal Registrar approval is required for aggregate data.

Step 1: Is this a national report, not already published by Australian Institute of Health and Welfare (AIHW)?

• If Yes, contact AIHW (contact details below).
• If No, go to Step 2

Step 2: Is this report published in NT Midwives Collection, Mothers and Babies or Trends report?

• If Yes, view the Open Data Portal or Contact NTPR
• If No, go to Step 3

Step 3:  Is this report required for internal audit purposes and is not for publication or presentation to external stakeholders including professional organisations?

• If Yes, contact NT Health Research Governance Office (NT HRGO) (contact details below).
• If No, submit a request to the NTPR for Aggregate data using the online form link.

Unit Record Data (i.e. each row contains details about a single person or case).

Note: NT Chief Health Officer approval is required for unit record data.

Step 1: Is this a request for a national study?

• If Yes, contact AIHW (contact details below).
• If No, go to Step 2

Step 2: Is this request required for linkage with NT data that are non-NT Health datasets?

• If Yes, Contact SANT Datalink (contact details below).
• If No, go to Step 3.

Step 3: Is this request for internal audit projects, human research or clinical registers sets?

• If Yes, contact NT Health Research Governance Office (NT HRGO) (contact details below).
• If No, go to Step 4

Step 4: Is this request required for data linkage (HRN) with other NT Health data?

• If Yes, contact NT Health Data Governance Office (NT HDGO) (Contact details below).
• If No, submit a request to the NTPR for Unit Record Data using the online from link.

Community Births

Reporting of Northern Territory births is the responsibility of midwives as most births occur in hospital and are notified to the Perinatal Registry by the "principal person" responsible at the birth (generally a midwife). However, there may be occasions where a birth occurs outside of a hospital setting.

To notify the perinatal registry of a community birth please complete the Midwives Collection online form.

Congenital Anomalies

A congenital anomaly is defined in the Public and Environmental Health Regulations (NT) as “the diagnosis of a structural or functional abnormality in a child aged up to 12 months that was present from conception or that occurs before the end of a pregnancy.”

*This also includes antenatal diagnoses

Medical practitioners are required to notify the NTPR if they diagnose a congenital anomaly antenatally, at birth, or up to 12 months of age.

To notify a congenital anomaly case to the register please click on the below link and complete the online form:

Congenital Anomaly Notification Form